Can Neuroscience Research Help Solve Her Son's Medical Mystery?

[@TracynTaane]

When she said" being disabled your in the hands of others ,and if those hands aren't kind what an awful world it must be ,"that really hit my heart

[@mariahrfordays1988]

Mylittlebearcub Savage yes! That stood out and called to my heart so strongly as well. Beautiful put and so so very true

[@boughtbythecross]

Mylittlebearcub Savage as a disabled person I can tell you she is absolutely correct

[@Theaterfreak]

I'm registered blind, although I do have sufficient sight to lead a fairly independent life. That statement went straight to my heart because it's so true. Unfortunately the vast majority of those hands are unkind, apathetic, often downright cruel.

[@heidiyeo6802]

Mylittlebearcub Savage it really did.

[@MsBabylove11]

Mylittlebearcub Savage me too!

[@sarakaminski5885]

How lucky are these two boys are to have a mommy and daddy who truly are the most beautiful parents in the whole world.. God bless your Beautiful family.

[@ivonned32]

Sara Kaminski Exactly!!!!!

[@jackieo.9904]

Sara Kaminski there are so many children who don't. Amazing people. They deserve everything in the world all the support and care.

[@sarakaminski5885]

Jackie lisa yes I wish there were more people like these two. Just think how amazing the world would be..

[@sarah3796]

So true!

[@rebeccaabel4589]

These are the people who really financial assistance. Thank God they live in England.

[@reginagillman5118]

These 2 parents have to be THE most loving and compassionate people on Earth!! What incredible humans they are!!

[@makkaqi8162]

plus it is so good to see that they keep caring TOGETHER for their boys...

[@ijustrealllylikecats]

I just love how Freddie laughs and jokes, he has an adorable sense of humor. And when Henry was looking at himself in the mirror, that huge smile was precious. Their mother has been faced with SO MUCH struggle and hardship and heartache.... But she still managed to raise two happy boys, the way she loves them through everything really touches my heart.

[@tysloane6089]

What a beautiful, kind, patient, passionate, selfless, hard working loving mother she is to her lovely boys. Very inspiring and really thought provoking. I’ve always known how lucky I am to have healthy children but this really puts things into perspective.

[@ellioshiem7892]

WELL SAID. SHE IS INCREDIBLE. AMAZING. AND DAD....❤

[@ThePeopleOfGoodwill]

Except for the part where she said she would’ve switched off the life-support. Pretty sure she’s a monster for that.

[@vickidickinson2888]

@@ThePeopleOfGoodwill sometimes it is a merciful thing to do. My heart breaks for this family, esp as the parents grow older. With extended family pulling out, they only have each other and paid carers. What happens to the boys as mom and dad pass on? Heartbreaking and heartwarming at the same time. We must do better.

[@chrisstone8210]

@@ThePeopleOfGoodwill Of course she's not a monster, and neither you, nor anyone else is in a position to be judgemental......unless, perhaps, you have been in the same situation. She and her husband have done a fantastic job, made sacrifices most of us couldn't deal with...and the last thing they need is criticism. How unkind.

[@siobhankane8198]

@@ThePeopleOfGoodwill Jesus Christ love, despicable post,

[@julie.1081]

The great majority of parents will say that they'd die for their children. The biggest difference with these parents is, they chose to live for their kids.

[@leonaleona1628]

As someone who's in a simular situation your comment touched me. Bless you

[@julie.1081]

@@leonaleona1628 Bless you Leona! Remember to take care of yourself too. There's nothing that brings more joy to a child then to see their mom & dad happy & healthy.

[@enyakot]

It's kinda what they're supposed to do. They have brought these poor children into this world, it's their job and their duty to take care of them.

[@michelecote4887]

I appreciate this comment. My son was and still is the ONLY reason I'm still alive.

[@MrJames-tw3so]

@@leonaleona1628 stay strong you are a very very good person. probably a angel that fell off a cloud and landed on earth

[@ConspiracyGamer]

So many of us take things for granted including myself. We're so blessed to have our health while others suffer on a daily basis. Thank god these kids have great parents!

[@kizzymagpie]

If we should thank god for the beautiful parents then do we thank god also for the boys illnesses? If not, then why? I'll tell you what, why don't we applaud the parents for giving great care to their children and... no, wait, isn't that what good parents do anyway 🤔 ... Cornwall doesn't have the access to the care needed, do you know why? Cornwall is not only a great interest to the holidaying but also to the second home owner. The lack of permanent residence in the Duchy means not as many health officials or resources, the same as being on a boat no doubt, but there you go. Charity, benefits and social security are there for the needy, not just for fun, and people's needs have sod all to do with money... money doesn't take the disability away, thus the need of the family is also there. Everyone should have access to support and help equally without discrimination. To want someone to resort to being broke before being allowed help is pretty messed up, but to want to dip into funding allocated to the poor when you are able to keep houses in London and Cornwall is also rather messed up.

[@tatette]

Such beautiful parents. Bless them. To be that level headed, positive and kind through everything they have been through...

[@MsKReads]

"We're drowning in land, why not float on the sea?" What a beautiful line.

[@austinrichards1740]

YourHuckleberry very powerful indeed I love it

[@CC12398]

Beautiful

[@victoriaquillin2170]

Excellent video!

[@pattifiore1860]

Shame on England social services for failing these boys and their family. Mom is an absolute angel

[@Annasea666]

Patti Fiore what about socialized medicine? Why can’t they get help?

[@Liverpoolboy01]

Patti Fiore they have had their funding decimated as have all services in the UK, don’t be too quick to knock something you know very little of. Have a go at the government you probably voted for!

[@Liverpoolboy01]

Anna KW 💤😴💤😴💤

[@pattifiore1860]

C Liverpoolboy01 who are you?

[@sharonristau2475]

Shame on England Shame. Its reality dump them on Social Service and float out to sea. Kidding but England with all their pride they couldn't see the problem. I would take the boys down to Socail Serv. and have them throw up on the desks and no diapers. Make them notice you. Call the TV Stations and media. Dump it on them. Is there a problem absoutely and arrive in front of the Royaity and park the children on the sidewalk do way out there for them. Because they can't live on a boat the rest of their life. God Bless you and I am very very sorry .

[@dandylion7626]

This makes me realize how I take growing up with a severely disabled brother for granted. Daniel is almost exactly like Henry, except that he can walk. I easily got used to watching over him, feeding him, changing him, helping him during his seizures, etc because I didn't know any different. It must have been much harder for my mom, especially since she had already had one normally developing son. She had to adapt to his needs and grow to accept that he will probably never change. I got to say she's done a pretty damn good job of learning how to take care of him patiently and lovingly. And kudos to her for choosing to deal with three more kids after Daniel. There is no one stronger than the parent of a special needs kid. I love my family.

[@tokki03]

Amen! I learned to be mama bear with my brother :)

[@marievepaquin-bergeron8975]

Same here.

[@billmartins5545]

So you suffered parentification?

[@michellehitt1976]

It sounds like your a really good brother. How is Daniel doing now, if you don't mind me asking?

[@apriljk6557]

@@billmartins5545 they adapted accordingly.

[@Jackie-rc6cj]

I think the title should be changed to" the most determined mother in the world who never gave up". To hear that one of the children has constant epileptic fits is even more heartbreaking.

[@Salwerth2822]

Don’t you find it odd for parents to take two severely disabled children, one with constant seizures , to live on a yacht, away from any hospital or urgent care facility? They have barely enough room to move, and can’t even put their feet on solid ground.

[@SJwasMADEin1987]

I adore how in love the parents are. Wonderful parents. So much love and respect to this mother.

[@chelseyrumberger3645]

The Dad is awesome with both of the boys. He has a way with them that if you watch just makes you feel so comforted and grateful there are people out there who can make the lives of those that are different so special.

[@susangloag4401]

Such a wonderful mum she is. There's absolutely no way I could do this myself.

[@uuesgirl]

The dad is equally as awesome and amazing

[@leonaleona1628]

I've had people say that to me. "I don't know how you do it or I don't think I could." My response is what other choice do I have? I love my child unconditionally and will do all can to help him. Its hard but you do it out of love.

[@clairemilner9095]

Susan Gloag I’m in a very similar situation with my son. He’s 18 but mentally only 3. He has severe sensory issues to noise, light and clothing. He is developmentally delayed. My husband and myself cannot work due to his care needs. One of us has to sleep with him at night as it’s the only way he will sleep more than 3 hours. We get roughly 4-6 hours sleep a night. It’s been at least 14 years since my husband and I have shared a bed. We have to survive on £60 each a week. My house badly needs repairs but we can’t afford to fix it. We can’t get help as we own our home. It’s not a life you choose. You live it because you have no other choice.

[@Michelle-qd9gm]

What would you do then ?

[@ThePeopleOfGoodwill]

She didn’t want to do it either. She said if she could go back she would’ve switched off the life-support. Did y’all miss that?

[@foofy3406]

having two healthy sons is difficult enough. i feel for these parents.

[@margaretpariera4007]

Hey, we have 8 kids, and my mum does all the work. My dad is always working out of state. It's not bad if everybody (kids) helps out and does something. One of my sisters, is a special needs. 😊😊😊 never a dull moment, it's fun

[@neighbourhoodwitch18]

Jillian Brunelli likewise ❤️

[@fauxmanchu8094]

Margaret Pariera I agree that there are benefits to a big family, lots of helping hands to do the work. But why eight?

[@GetToDaChoppa-k5r]

Did they sell their home in cornwall as well?

[@indigo-streak9912]

Faux Manchu why not? My mother has seven siblings and my father has seven siblings and they all turned out alright, so why not? If you can support them all and give them equal attention and love then go for it. Edit: sorry, my father has eight siblings, I forgot my father has a sister outside the country.

[@stephaniebowens9958]

As parents we look forward to our children's growth, though we love them as babies. I can understand how this mother feels. There's nothing wrong with feeling overwhelmed, having two children that have huge needs physically, mentally and financially. Many would have put their children in a care home, but these parents are teaching the rest of us what patience and love really looks like. God bless them and their two youngmen.

[@pattifiore1860]

If you haven’t read Henrietta’s book I urge you to run and find it because it is the most inspirational and heartwarming and dedicated piece of literature I’ve ever read. The parents are warriors and the boys are just sweethearts. The book will make you cry and scream with outage and always feel the highs with them. I am in awe of Henrietta, just awe

[@samanthab3247]

She’s absolutely incredible. I don’t think I could do a tiny fraction of what she is able to do, and with so much grace.

[@elmonovagales2929]

name of the book

[@dmsmiles4044]

What is the books name?

[@rebeccaparker3370]

Henriettas dreams

[@UsernamesForDummies]

The pure joy in the faces of these kids is simply down to their parents and carers. I can’t even begin to imagine the energy, love and hope it takes for them to not give up.

[@carolesanchez5700]

Having been the mother of a disabled child, who died recently, I so totally understand the richness that these children bring to parents, despite as Dad says, that you do not have the 'normal' joys of raising a healthy child. It is a hard road, but a labor of love and certainly provides more soul growth than raising healthy children. So many would term my child's condition as a tragedy, or devastating, but my son was and will remain the greatest blessing of my life. They bring the deepest pain yet the deepest joy that only parents of these children understand. God bless you both.

[@user-wickedflower]

I would love to see an update several years on for these boys, technology improves day by day. Mums positive outlook makes a huge difference.

[@aquamarine0023]

Dad's positive outlook too! They are both INCREDIBLE parents ❤️❤️❤️

[@sprkl5d]

@@shanahaim5935 Thank you so much for sharing this link. I was wondering what happened and how things turned out.

[@loopylou6841]

My little girl is GDD , and she has a very similar sense of humour. I think she is just the most amazing human Ever 🥰

[@tacman1974]

The title of the documentary should have been "Heroes". They are heroes. All the best

[@Brenzzy]

What an incredibly strong and wonderful woman. She’s done an outstanding job caring for her beloved boys. A special bond with an equally wonderful man. You’ve proven that it can be done. With love and for love.

[@tysloane6089]

Wow, just finished and I am just in awe of how strong both these parents are. Moving onto that boat and just living the dream traveling and just being a family, so deserved. AND still fighting the battle with the social care system in order to help other families, despite being awarded little help themselves. I hope they are all happy and still adventuring the world.

[@liserina2920]

I am so overwhealmed after watching this documentary by the challenges this family is facing and it is so wonderful to see the dedication the parents are showing to provide a good life for their boys. I would love to see an update about how the journey is going, the improvement of the boys' health status, any significant changes at all in their lives, if the american researchers have found any new insights in Henry's disability and so on and so on...

[@Feemailgamer]

Omg that laugh when he sat on the fart bench is pure innocent joy 😂 I love it

[@sarahschannel1980]

Omg his laugh is seriously contagious.. I laughed so hard it made my eyes water.. love love love

[@fawziaabdurrahman2251]

Freddie laughs alot. but i connected more with henry.

[@ohmeowzer1]

Feemailgamer I

[@blingeefairy]

Yes he must be a true character.

[@bennihaha87]

I’d sit on it and laugh and I’m 31 lol

[@eslaby3908]

The boys are now 29 and 25. "When we lost our house, we set sail with both boys for six months, and took two carers with us - who are now married with two children - and we ended up in Cornwall. “It has been really challenging because it's 300 miles away from friends and family, but the care package here is now 450 hours a week.

[@sharonplant4102]

E Slaby how are the boys doing now there about my kids ages 26 and 30 my 2. Would you be able to update us please that fart bench and that dirty laff had me laff out loud bless him.

[@dogodivaamorfati7190]

So glad you have the help with your boys. Thank you for sharing your story.

[@clambion]

@@sharonplant4102 they are 32 & 28 now, live at home with their parents. henry has seizures during the day & night, and parents have been warned of SUDEP (sudden unexpected death from epilepsy). he has no control over his body. freddie has a restricted oesophagus, which means that his food must be prepared in a specific way, otherwise he could choke on his food (which has happened a couple of times & as a result he's been hospitalized; it's life-threatening). he needs monitoring all the time. both boys' lives have to be organized by their parents. the parents are up 2-6 times during the night to supervise the boys. henrietta has set up a gofundme, if possible consider donating -- www.gofundme.com/f/g7srh-henry-and-freddie-spink (all the information listed here is from their gofundme page)

[@Skelliboness]

c. camille i

[@autumnhartley469]

Your A true inspiration. My little sister is Cortney Hartley Walker. you can find her on face book. She has three boys. Two are severely Handy cap. The boys, especially the older one who is nine have epileptic fits. My sister changes diapers for two big boys. they are like 6 months old in grown boy bodies. your story hit home for me. my sister could use some encouragement. can she reach out to you? - Autumn Hartley

[@ashh8496]

"8 hours a year" what a massive hit to the heart that was to hear. We dare to call what we live now a civilized world there's nothing civilized about the way we treat others who need help. And the sad part is that is been like this all along and I don't think it will ever change and that is soul crushing

[@heidijohannes4271]

Exactly, I mean what is even the point!? 8 hours a year like what how do you even divide that

[@everydaywithsandra]

Seriously that really got me too I just had tears and anger so crazy

[@justinalane5242]

Aww Freddie's laugh is so adorable. Just him laughing makes me laugh. Reminds me of my son's big belly laughs. So sweet❤️

[@kathrynlouise1372]

I’m a carer for adults with severe learning disabilities, and I have so much respect for parents who are carers 24/7, it is bloody hard work but I get to have a rest at the end of my shift, they don’t. Amazing parents

[@globalwarmhugs7741]

Well, I needn't say what I was going to say, because you've said it succinctly for me.

[@lynnjudd9036]

Been there, done that. It is hard work and the pay is lousy but you do it because you love doing it.

[@aussiefurbymogwaifan6621]

As someone who is autistic, the disabled community actually dislike "severe" because "functioning" labels are inaccurate and harmful, as explained in these videos: kzbin.info/www/bejne/gJS8ZWRpeMyLqMU kzbin.info/www/bejne/iKqtaHSdhLCIosk kzbin.info/www/bejne/kH3Xiqx6mMupZ6c kzbin.info/www/bejne/iH2tiaSihLWNa7c

[@bridgieoh9326]

Unless you've walked in their shoes for a year or so, people have no idea the heartache, mental and physical wear and tear on parents, family and relationships. The 24/7 drain on all senses. Systems in place are set up to fail and destroy the mental capacities of parents. You have to go broke to get help. Jump through hoops to get help. They push pro life, but when you give birth, the child is forgotten and your on your own. Healthcare and assistance only goes so far or is under funded. And when the health issues are as severe as these two boys, it goes on forever. There will never be a break. My heart goes out to these parents. :(

[@AntosMichael]

A year? Let them try a day

[@donnaspears1970]

What a wonderful story! How courageous and loving the parents are with their boys.

[@bethroesch2156]

These are some super inspiring parents. This is definitely a case of life hands you lemons, you make the best darn lemonade in the world. Prayers, love and strength to this remarkable family. If I ever feel whiny about my circumstances, I hope I remember these folks. If they can navigate this on their own, my inconveniences are nothing at all. True heros ✌️💖

[@PHlophe]

beth, never a good idea to use people's hardship as a tool to make yourself good about yourself. no idea in what world y'all think its ever ok.

[@bethroesch2156]

Lechiffresix six never used anyone else's hardship to feel better. If anything, it embarrasses me to think about what I think a hardship actually is. Compared to many, I have no idea what a true hardship is. It's a reminder to not be so quick to indulge in self pity

[@generationx9294]

Beth Roesch I concur with you. Just when I wouldn't blame them for wanting to give up thousands of times over, they've picked themselves up by the bootstraps time and again and never lost the faith to carry on. That is *truly* inspiring.

[@abebabeyene6779]

This lady is a true definition of a Mother God Bless you and your Boys

[@aquamarine0023]

Wow, what an incredible story. These two parents are beautiful, amazing, incredible human beings and I cheer them on valiantly and wish all the happiness and joy in the world to them and their sons.

[@tristannguyen7383]

For those of us who think we have all the problems. Surely the lesson here is that love is unconditional. Bless you Spink family .

[@bookwoman40]

Two amazing parents, I stand in awe of their courage.

[@kimfoster6755]

This was such a beautiful documentary. I felt almost every emotion while watching this. I loved seeing Henry on the horse with his parents by his side. That's a power couple, no a power family! They got this. ❤️🙌

[@mk5294]

Actually, it was Freddie, sitting on the horse... I too loved this documentary, really beautiful indeed!

[@anaadamz375]

She’s incredible . Honestly know I couldn’t do a fraction of what she does .

[@simonelefebvre2523]

I am a Spec. Ed. teacher and my mind and heart stand in awe of these marvelous parents! God bless this amazing and courageous family!

[@ShoutItFromTheHousetops]

I hope everyone watches this video in it’s entirety. It’s about the most gut wrenching, boundless love that a parent can have for their children. The sheer and mutual determination, faith and love these parents have for one another is on a different plane...a Heavenly plane. A true example to us all of what can happen if one continues doing what’s right in protecting their family and holding onto the gift of hope in the vision that was given.

[@kadidiallo9499]

My heart is bleeding as a mum.i really don't know how I will cope but I believe God as a better life .the almighty bless his family 🙏

[@zoe9632]

💜

[@Jexxikak]

What an amazing family ! Such strong, intelligent, and patient parents !

[@natasha83196]

Many comments critiquing the parents for their decision to buy this yacht, but I don't see a problem with it. They can choose to be shut in with the same every day struggles, or they can give their kids the experience of a lifetime. I choose the latter. Life is too short and you can either let your circumstances paralyze you, or you can experience life to the fullest in spite of them. Many families cannot do this, but they can and they should.

[@allim.830]

This broke my heart. I have a child who had a very similar experience to Freddy with a very different outcome. The being born unable to breathe, being whisked away to nicu, the expectations of his early death, the speech and gross/fine motor delay, the immature esophagus and projectile vomiting, the autism diagnosis..... all the same. But he’s now a happy healthy nearly 5 year old. Although his speech and social skills are behind. They’re not more than two years behind and he is considered high functioning with advanced problem solving abilities. It truly shows the difference early interventions make. I’m so blessed and I empathize with her deeply.

[@jessgrn]

When they went to Cornwall I smiled all the time. The boys and parents sparkling joy and relief

[@dogodivaamorfati7190]

I have 11yr old identical twin boys with autism. I am a single parent with no living adult family. I understand their lives so much but so glad the parents have one another and the funds. It is very hard for me alone but I will never give up my gifts from God.

[@Zoe-dr5ps]

That sounds very tough. Are u ok?

[@twilightingX]

As a mother of a severely disabled son, I can attest to how hard it is. When you have a disabled child, you love twice as hard. But you die a little inside every day. I’m single mom of 3 including my special needs son. It has been had, but rewarding.

[@ellioshiem7892]

YOU ARE AMAZING. I WISH I COULD HELP YOU. ❤

[@twilightingX]

@@ellioshiem7892 Thank you for your kind words. I always feel like I could do better. So it’s good to hear someone thinks I’m doing well. Xx

[@ellioshiem7892]

@@twilightingX YOU ARE WELCOME. IT IS VERY HARD FOR 1 MOTHER. YOU DO THE BEST JOB. REALLY COMMENDABLE X❤

[@nutmeg5]

Wow. Just wow. There’s nothing else to say. Or I should say, my vocabulary is grossly inadequate!

[@aussiefurbymogwaifan6621]

@@twilightingX as someone who is #ActuallyAutistic the disabled and autistic community actually dislike like functioning labels, as they are harmful and inaccurate as shown in these videos: kzbin.info/www/bejne/gJS8ZWRpeMyLqMU kzbin.info/www/bejne/iKqtaHSdhLCIosk kzbin.info/www/bejne/kH3Xiqx6mMupZ6c kzbin.info/www/bejne/iH2tiaSihLWNa7c Also the disabled community hate euphemisms like "special needs" as explained by neurodivergent_lou: Disabled people's needs are not special, extra, burdensome or additional, they are human needs. Referring to disabled people as having special needs is inaccurate. As an autistic person, I need to be able to communicate and express myself, that need to communicate is not special, that need is the same as every non disabled person. I might just need accommodations in order to communicate. The term 'special needs' makes it feel like accommodating disabled people is optional, which it is not. The term special needs is also associated with special treatment too and it gives society the impression that instead of accessibility being a right, it is 'special treatment' or a 'special privilege.' If disabled people's rights were seen as the rights that they are (instead of being seen as extra, additional or special) then perhaps wheelchair ramps would be in every building, plastic straws would be available to those who need them and disabled toilets would be made to be available and accessible. Instead, disabled people's accessibility rights are seen as an afterthought. I want to see disabled people's accommodation needs normalised and the term special needs does not do this for me. It 'others' disabled people. It separates disabled people's needs and the needs of non disabled people. When I was labelled as having special needs as a child, it took away my ability to feel pride in my disability too and see disability as part of my identity. The term special needs often infantilises disabled people too. Disability is not special, rare, exceptional or unusual. Disability is a normal part of life. The term special needs makes it sound as if it is unusual or rare. This too heightens the inaccessibility cycle. If people believe that disabled people are few and far between then people don't see the point or the benefit in accessibility. Accessibility is however vital. Sometimes people say that they don't see my disability but just see my needs, specifically my 'special or additional needs.' I feel that this is often because people see my disabled identity as something inherently negative, which I guess is part of growing up in a society which sees disability as something to be ashamed of. I need people to recognise my disability. I am exhausted by the euphemistic terms used to describe disability. which I guess is part of growing up in a society which sees disability as something to be ashamed of. I need people to recognise my disability. I am exhausted by the euphemistic terms used to describe disability

[@abebabeyene6779]

What an extraordinary Family those like myself who complain about smallest things should look at this family and realize how easy our life is , I absolutely admire the kids parent let God continue Bless you all

[@hirainawhaanga6253]

Two most amazing parents who deserve to be applauded for their commitment to the nurturing of their children. All the best for the future.

[@jorgepereira1805]

I knew the Spinks personally for many years as I use to be Herietta and the boys hairdresser for a good many years. They as a couple are a delight and she a very devoted mum and both set of parents fantastic human beings. Even the carers were great ( I remember Eva in particular. I already knew of a lot of the story here portraited but this documentary has even helped me join the dots to better understand the uphill struggle they faced in the time we knew one another. I wish much love to the family as I only have good memories of them all. J. Pereira

[@barbierose6485]

Beautiful documentary. Strong people their mom and dad are

[@beautifullymastered1914]

Bless this woman’s heart, it breaks my heart that this happened to her twice, wow I commend her that is a lot to deal with mentally, physically, emotionally! This is 😭 sad. Prayers going up immediately

[@cameraduong9886]

I think she taken prevent pregnancy pill and when she wanted have kid she doesn't wait at least 6 months without taking that pill that why her children has birth defected

[@dreamer33ish]

Absolutely amazing parents! Unconditional love .....and a determination to not let silly officials drag them down... What a lifeline their win gave and enabled them to do the things that was imperative to make life easier for all of them! God bless you all. X

[@billmartins5545]

Imagine what else they could have done with that time and energy.

[@l.c838]

What amazing and inspiring parents! My very best wishes to this very special family.

[@rodwilliams4170]

People like you make people like me want to be a better person. Thank you

[@gillianjohnson3023]

Truly Amazing parents .You must love each other ,for what you have endured and had to give up .You never gave up on your boys!!!You are all very brave to live on a boat.And most of all you never gave up on one another.

[@oldfan1963]

Such an absorbing story. I'd love to know how the family is getting along.

[@laurenboniface7420]

They're doing great! Live back in England now and did find the help they need and have been given help with multiple carers 24/7 :)

[@deniseclifford419]

@@laurenboniface7420 Such great news! I was wondering what had happened as the video was from 2005. What exceptional parents. Is Henry still having epileptic fits? Nowadays medicinal cannabis is a very successful therapy.

[@juliamargolis1629]

Wow I have the deepest respect for these parents. What an emotional whirlwind to sacrifice EVERYTHING for these two very disabled boys who are completely helpless! This couple was reduced to begging to get by in order to give them a semblance of a life worth living. Thank you for uploading this documentary; it has helped me put my problems in perspective 😊

The pure joy in the laughter of Freddy is truly inspiring!

[@baylieharsh4518]

How lucky these boys are to have such incredible parents. They are genuinely wonderful people.

[@_epic_dyslexic_]

Such a beautiful family, you can really feel the love and it is gorgeous. Freddie is absolutely precious and would be a joy to know! It is disgusting how the ones who need these services most are the ones not receiving it, yet it is being stolen by all the ones who are abusing the system and get away with it so easily. How can anyone see this family and deny them help or not even try to help them?

[@sandrabennett4499]

I love these boys watching them puts a smile on my face.

[@billmartins5545]

Why? They are severely disabled. They cant do anything for themselves.

[@airplaneoverhead]

The mother is amazing, the boys are blessed to have the parents they do

[@alisonalibongo3177]

A lot of respect for you & your beautiful children. I work with severely disabled children. I know how hard it is for parents with the home care.

[@elizabethannegrey6285]

These parents are heroic. They deserve much more support than they have received.

[@emradford5173]

I feel this video so much! Being a parent to a child with needs is hard! I’m a single parent to three kids - 2 with disabilities. Not every disability is evident from birth and doesn’t appear evident until a few months right up to a couple or few years on. You fight to get paediatricians and other people to listen, you document everything, you keep pushing to get them a diagnosis and have things explained - a word you can tell others when they bluntly say ‘what’s wrong with them?!’. Milestones are delayed, conditions are unexplained, things don’t make sense but most brush it off and say ‘they’ll catch up! And then by the time you finally get help, they’re older and miss crucial programs due to age! It’s a battle, it really is. It is also incredibly isolating and you feel very alone and lost at times yourself. It’s exhausting, it’s mentally and physically taxing. You are always fighting. But they also bring so much joy and you wouldn’t change them for the world.

[@RobinMarconeCassidyRN]

So heartbreaking that life has to be an every day struggle for these wonderful parents. I would love to learn how their lives turned out. Hopefully another book written. Positive thoughts and prayers for a beautiful and well deserved family.

[@hidden7195]

I have an autistic son, 11 with ODD and ADD , the last 2 years he’s stopped punching me in the head. My husband doesn’t cope, so for many years denied the diagnosis and yells a lot. I know this won’t change by me saying this here. Iv evolved with his therapy and doctors and feel I have good ones now at last. I have to work full time and shifts to pay for the extra . I feel massively alone everyday and have had many many ongoing fights with funding agencies. I cry in the shower alone a lot where the kids won’t see or my husband judge me as weak. The pity I see in people’s face is hard to see. What I really crave is kindness.

[@pearlyq3560]

Someone needs to make a movie out of her books! Stunningly beautiful parents and what a writer's voice the Mom has. This may be one of the best documentaries I have ever seen. The parents are incredibly inspiring!! (Mom could have been a super model and dad is gorgeous too!).

[@barbarafontaine8285]

We all have passing thoughts that we have no control over. We really don’t know what we are going to do until that time comes. Your strength and dedication to your children and to each other is just amazing and a quality that not very many humans are blessed with.

[@HelenEk7]

I'm surprised families with disabled children get so little help in the UK.. I was offered help for my boy, I didn't even have to ask for it.. (Norway)

[@Bazanadu]

Helen E Well, they do but as pointed out in the documentary it is largely means tested. The local authority is only required to give extra help beyond central government non-means tested assistance when the family qualifies by having a low income. It's a complicated system of local/central government provision.

[@HelenEk7]

But why were they then told that the only way to get the help needed was to dump the children at the local counsil?

[@Bazanadu]

Helen E because they were assessed as having too much income to receive full support from the local council - "means testing ".

[@Bazanadu]

Helen E this is a link to the different forms of government support. If you scroll down you can see a link to DLA which they would have been entitled to. www.gov.uk/help-for-disabled-child

[@HelenEk7]

I happy though the family in the video was able to get help, even if it took them years to get it.

[@buttercupj6208]

I love seeing parents who are so dedicated to their kids seeing Henry and his brother Freddie having fun at Disneyland melted my ❤️ God bless their family and everyone 🙏🏻

[@lakshmimuralidharan8294]

Amazing parents! The mother's love and determination is inspirational. I bless your family with love and light!

[@omennemo8844]

A very encouraging story. People who are on the edge should watch this story. It may give them hope. Great documentary.

[@ElleChelleSky]

This mom is amazing. She understands that her reality is awful, for both herself AND her sons, but she’s still the best mother she can be. She doesn’t act resentful. She makes sure she keeps the boys busy and stimulated. She’s attentive... she’s great. There’s a spot in heaven held for her, that’s for sure!

[@zoe9632]

..... & the husband.

[@happymomof5563]

You both are amazing parents!!! I cannot imagine what you go through and for so many years!!Freddies laugh is so contagious and henry seems like such a loving soul you both will remain in my thoughts and prayers!

[@kirstyi7860]

What a wonderful loving Mum and Dad! She's more involved with her children than 99% of the population, which includes me! May God bless and keep this family as their children go from strength to strength.

[@patcummings7533]

Tons of love to you all from a mom that has gone through the same battle. Your love for your boys is what it's all about. You have learned lessons that every person on this planet should learn. Keep the faith. xo

[@itendj5386]

Much love and respect to these loving, outstanding parents! God bless their good hearts!

[@raffaellavitiello1762]

what an amazing mother, l am speechless, such a huge task, and so much love, in those parents for those beautiful people, you are in my prayers!

[@cureious449]

I can't wait to hear the rest of this story - the scientific responses/answers, the boys future, their fight for disability rights, the couple's survival, their oceanic adventures. This story is so compelling as it has numerous angles and vantage points. It highlights a handful of topics surrounding the core element of children with disabilities. This parent team is purely incredible to me and their fight is powerful. Their love for their children and their commitment to them is insanely obvious and beyond reproach. I wonder where it is that they draw their strength from (I don't recall any religious mentions in the video so I can't assume it is from God or another higher power). I was sad to see the mother burn her audio tapes - I personally felt they could be an invaluable educational tool in the right hands or setting. But I do understand why she did so. I really enjoyed how honest the mother was with her feelings - the good, the bad and the ugly - it is rare to find such honesty. Both of these parents made me feel God-smacked! They are inspirational! And not to leave out the boys - they were absolutely sweet, loving and heart-warming. And they were so clearly happy boys with a high quality of life. It is obvious that they have been well nurtured. I will be keeping this family in my thoughts and prayers.

[@ghosto.o1704]

There doesn't seem to be much information but it seems they did manage to move to Cornwall in the end

[@Efhgi]

If you google them they have a go fund me after one of the carers ended up hurting one of the boys.

[@Bek_M84]

I was so shocked to hear that the council were only going to give them 8hrs a YEAR. I thought she was going to say a week which would have helped them enormously. The government's need to put more money out there for families like this and people living with a disability. I have worked with disability for over 10yrs and loved every minute of it. The people I looked after were like family to me. You end up with a very special bond with them and there families. I was always smiling at work and had so much fun and I felt like I had a purpose to help these beautiful people. I hope that one day soon there will be more available funds for these wonderful families and people living with a disability xx

[@nutmeg5]

Unbelievably inspiring! I admire this couple so so much!

[@brendadickenson6743]

I applaud these parents for seeing their family with the boys as extraordinary and needing a different way and taking it. May God be with you all.

[@gee_emm]

wow. respect to those parents. so loving and patient! 🙌🏾

[@MissTotos]

After watching this documentary I think it's absolutely deplorable that this family and many other family with disabled members, have zero help from their government. I mean, they pay taxes like everyone else they should get help for their children. What an awful situation for this family to be in.

[@poopinfruz9771]

MissTotos i think the problem come from the amount needed. For not alot of return. All the specialty training and equipment. You/taxes could end up spending well over a couple million keeping one severely disabled person alive into their 50's, no problem with that in itself. But if that person is to disabled to ever work... and there is thousands who won't be able to..

[@bharatecon]

It's not just that they pay the taxes, it's also that we all pay taxes should be utilised in such needs, not for just Political propagandas & freebies.

[@amymack1954]

And this is the sort of state-run system that *certain people* want for the U.S. No thanks!

[@claire99ism]

MissTotos I agree. Cameron had the help financially for his son whilst working.

[@sasharabson7829]

It doesn’t make sense to me that the there local council wouldn’t help until both had lost their jobs and on benefits! Surely it makes more sense to support the family so at least one can work and bring in money to top up everything! It’s not like they are living the life of luxury if anyone needed help it is them!!

[@kindpeople7920]

Wow, what an incredible awesome family you are! Through everything and you continue to have positive experiences as a group! That alone is huge success! Bless you all..... including the careers!

[@lifeatthelake9305]

God bless this family,this parents deserves the world

[@q9_3rj-imxN]

ありがとうございます！

[@thedreadqueen2495]

What an absolutely extraordinary family! The strength and courage you both have as parents is immense! I cant imagine how hard and stressful this must of been for you?! I wouldn't of survived! You are both tremendous parents and your boys are very lucky to have you 💜

[@Hapitap]

It happened for these boys to have 2 freaking amazing parents and they deserved to win

[@dianamattia40]

My Goodness, these are wonderful children and she is such an extraordinary mother and so is the father!!! I just wanted to cry. May God bless this family! This world can be so cruel with people who have disabled children. I totally look up to these parents with upmost respect ✊🏽

[@pearlyq3560]

What beautiful, loving, amazing children!! Freddie just right cracks me up!! What a rascal! Such a ham! This is a REAL family -- full of love, beauty, joy. Your feelings and struggles are very normal and human, never feel guilty: addressing those thoughts and feelings is healthy. The love in that home can be felt through the computer screen. What incredible parents you are -- you can see just how you LOOK at them, how much you love those boys and how much those boys love you in return. You have put love into this world -- something that is sorely lacking. Thank you for sharing this incredibly touching story. If I could stand up and salute you, I would. Well done. Your boys are totally amazing, they are filled with so much joy and love and humour. I want to kiss their cheeks!!

[@ObamAmerican48]

Equine therapy is so wonderful for kids and adults with cognitive challenges. Something about the physical connection with a large but gentle being is truly therapeutic. Many kudos to mum & dad, I am humbled by the dedication to their sons.

[@CSD221]

What a beautiful family! Those parents are amazing and I LOVE their attitude!

[@lisahughes8779]

“We’re drowning on land, why not float on the sea?” I love these people. So positive and amazing parents. 🥰

[@vikkiledgard8483]

What an amazing family! Love for them, and all my hopes for all the luck & fortune for the future, pours from my heart. ❤️❤️❤️❤️

[@GetToDaChoppa-k5r]

that kid is going to be the next Mozart.

[@MRB____]

What amazing parents! If only every child in the World was raised with this much love. The World would be a much better place ❤

[@bileigh8675]

These are two of the kindest people and loving parents. I hope they get the support they need for their boys.

[@Yolanda_Ortiz]

This is my life. My son Nicholas has never walked crawled or talk. He's totally dependent on us. Diapers , medications, ventilator, feeding tube. It's hard when as parents we want to go out but can't. Thanks God here in New York we have private duty nurses. Our outings are during the day. I wouldn't change him for the world. My older kids and younger daughter love and help with him. When he was born I kept saying to the doctor the dr said it's been a while since you had a baby. Long story short his losing oxygen at birth caused it. We sue the hospital and won big time. I'd rather have nothing and he be normal as any other child. God bless this family ❤️🙏

[@Azariachan]

What a heartbreaking story. :( Yes, the loss of oxygen at birth can permanently damage a child's brain. One of my younger brothers became autistic in this way. He was born with the cord wrapped around his neck and had to be resuscitated, and it affected him for life. It's terrible how a perfectly healthy child's future can be destroyed in a single moment.