Interview with Lucas about Huntington's Disease

Lucas shares his experience of growing up in a family with HD and the impact that has had on his life. Part of the HDA & HDYO's 'Young People' interview series.

[@lucasmaxted3856]

So just an update i've been tested and can confirm that I do not have HD. Luckily it was a very quick process and now can begin planning for the future. Once again thank you for all the lovely messages.

[@christineh.6465]

God bless you, Lucas! I am so glad to hear that 💜☺️

[@melissafox3613]

Just watched this today . you are a beautiful young man with a beautiful soul . What you went through was not your fault and you did the best you could with what you where dealing with. Most kids your age would not have done half of what you did. Im so happy you tested negative for hd it is a horrible disease that needs more awareness. Thank you for sharing your story. P.s. I really laughed when you said you used the pillow to get her instead of actually hurting her. I know she loves you its the disease that made her act the way she did.

[@mareeisaacs9584]

Wishing you all the very best for your future Lucas ... you have been on a huge life journey ❤

[@chrisellenhatcheaton9285]

You are amazing, Wishing you the best

[@chrisellenhatcheaton9285]

Thank you for sharing,,,,,

[@lucasmaxted3856]

Thank you for all the nice comments. I didn't even realise (or maybe forgot) this was on youtube until today. Thanks again guys

[@jessiekava3741]

Lucas Maxted i just wanted to say that you handled things so well and as an aspiring academic this video was inspiring because a cure for this disease is so necessary, it could also aid in curing Alzheimer’s, FOP, etc, when only one copy of the altered gene causes the disorder.

[@saharkholif4490]

Lucas Maxted sweetheart I love you so much you such amazing young man god bless you Sahar from Egypt 🇪🇬

[@caroltrudgill5564]

Lucus. How's you xx

[@Mariana-iq9tj]

I have a similar story as you. My mom had HD. I moved out to live with my dad when I was 11. I feel so guilty because my siblings still live at my moms house half of the time. I admire your story so much. I hope your doing well these days.

[@saharkholif4490]

Mariana Spalding price I am really sorry for your mom hopefully she is doing well now

[@sandymuddy5766]

Bless his heart, maternal side all with HD his paternal side just uncaring for this beautiful soul 😭

[@loriscook5231]

Why did the situation get so bad,couldn’t the family Dr, social worker, school, family, friends or neighbours see what was going on and help. He was a kid, missing school and caring for his Mum, Society let him down. I’m glad he is getting some support now

[@cocopoopers4769]

Lucas.. this broke my heart. you are beautful

[@jezzawalton1798]

Well done mate. You are a top lad. I’m in same boat with the test. Just found out about HD being in my family. I hope all is as good as it can be Lucas Jez. Leeds

[@autumnconway3642]

How are you doing?

[@nessa9752]

You can tell this is very hard for him to talk about. The amount of times he takes a sip from his water and his body language in general. Bless him. He really struggles with his mums illness and it makes him nervous to open up. I hope life is better for him these days

[@makocadey]

I think he has it. The way his hand is moving ..wobbly

[@lucasmaxted3856]

To everybody who has and is dealing with the effects of HD, stay strong guys and I wish you all the best.

[@bluejaywayx]

You seem to be a very sweet boy. I really hope you're well.

[@peony4954]

I’m so glad you tested negative Lucas, best wishes

[@bahbrajonz]

I hope this young man is fairing well. He has a gentle spirit but it sounds as though people have abandoned him.

[@taleandclawrock2606]

How incredibly traumatic for this young man. While i understand Mum was not of full capacity for decision making, WHY was Lucas left in a situation of constant abuse and assaults??? Why were police arresting someone for essentially being brain damaged by Huntingtons, or her son for defending his life??? Why does society not have compulsory safe homes for such sick people who are a danger to themself and others, and help for their children for alternative supported education???!!! So much love to you Lucas. Whatever your journey, you have given this world a very precious gift. You didn't ask to be born at such high risk, and especially now it can be tested for, its not fair to you. This interview is very enlightening for anyone with Huntingtons refusing to consider the unacceptable lifetime harm to potential children, and to health and policy professionals grappling with the ethics and logistics of care for HD sufferers and their families. I wish only the best for you going forward.

[@youhaventwashedmytings]

Poor bud. None of this was your fault and none of this was your mother's fault. Good luck to you, Lucas. I hope you find someone you can talk to and who can help you.

[@unstrung65]

The very best of luck to you Lucas - you've been through a lot .

[@PixieTheRabbit]

II am very glad that Lucas has not inherited HD. I am also glad that he is finally able to get on with his education.No minor child should have to provide personal care for a parent, especially one who has a neurological disease. Although the parents cannot be blamed for irrational, aggressive behavior, it is unconscionable to leave children in that position. Shame on the police and shame on all the people around him, who knew and did nothing. Some people are incredibly judgmental about family members, who refuse to stay and provide care to people who have HD. Especially toward the children who are young adults. What we have to remember is that these grown children know that their own time is short, and those parents might live a long time. There have been cases of mothers and daughters being side by side in a room in a nursing home. Often, the children start with symptoms at an earlier age. The children need a pass. They need to be allowed to live and enjoy their own lives--visiting their parents like normal people. Not being chained to sadness, until they themselves are stricken.

[@Virgowolf11]

I prayed for your family, may God bless you all in extrordinary ways!!

[@lydiamoore142]

I am so happy for you. You are a great young man….and a cutie to boot !

[@IPKAE]

I was bought here by my uni work to see how family and friends cope up with HD as I am a medical student and I am really sorry to hear your story. You are wearing a really brave face through the interview . God bless you and your family. Thank you for coming forward and telling us your story

[@JonathanHernandez-mm3nd]

May god be with Nanna and I’m sorry for what happened to you Lucas and may god be with those with Huntington’s Disease.

[@ontoyoualways9183]

"See it from her point of view".......pretty mature thought.

[@vdeniceeckert3494]

So sad another family member didn't step up for him

[@bettywith2girls]

Exactly! Wow.

[@jetjegoesdutch7933]

Makes me wonder how Lucas is now in the year 2021.. if he got tested and such!!

[@au_barb]

He has tested negative!

[@jetjegoesdutch7933]

@@au_barb thank you.. well that´s a blessing xxx

[@Katiepiepie666]

HUGS!! Love you kiddo XX Almost cried but managed not too. XX

[@Katiepiepie666]

I just watched this again after so many years, it still makes me so proud of you Lucas. Coping with so much so young. Just a note that Lucas's Uncle was moved from home to home as he had/s very particular and challenging care needs. But after a few shuffles he did end up with the best care we could hope for, as did Lucas's Mother. Hoping to get to the UK soon for another round of visiting. XX Auntie

[@422581216]

LUCAS ,PLEASE GET TESTED THEN YOU CAN MOV FORWARD WITH YOUR LIFE, MY BROTHERS CARRIED THAT LOAD A LONGGG TIME NO TEST WAS AVAILIABLE . DO IT FOR YOU.

[@sandradalton1611]

I wonder if he has escaped this disease. 🙏

[@unstrung65]

He has !

[@sandradalton1611]

@@unstrung65 wonderful news! Thankyou.

[@bethreddington5264]

I just been diagnosed with Huntington's Dieiese and I can't focus on things I also smoke and I have to use use a fire proof appron 😔 please help me😩😭

[@autumnconway3642]

My son has it, How old are you love?

[@bethreddington5264]

@@autumnconway3642 22

[@Virgowolf11]

HDYO do you have go fund me connections to indivuals and families? If so I will definetly donate. Thank you for bringing light to this disease.

[@HDYOFeed]

Hi @montgomery - thanks for the note. We don't currently know of any families setup with a GoFundMe account specifically for their needs. We do take donation directly through out website (en.hdyo.org/eve/donate) and put all funds towards projects and support for these families impacted by HD. Give us a should if you have any more questions, [e-mail]

[@Virgowolf11]

HDYO Thank you so much! I will be contributing to this cause and I will definetly recommend others to donate as well. We all have to be there for eachother.

[@whereismymind2641]

My grandad when he was in hospital for HD before he died, he lashed out at a nurse , and they had to move him. So my nan tell's me

[@HDYOFeed]

WhereIsMy Mind? Hi! It is quite possible you're granddad did lash out at a nurse. Some people with HD have behavioural changes as a result of the condition which makes them do things they wouldn't normally or have done in the past.

[@marajean1000]

You are a sweet boy....just want you imagining me folding you in my arms! You are loved1

[@saharkholif4490]

Lucas I wish you are my sweetheart son I love you 💕❤️ take care I am praying for you

[@silviafernandez5862]

Me encantaría que se tradujera las entrevistas al español con subtitulos

[@caroltrudgill5564]

Life is so cruel

[@autumnconway3642]

It isn't all bad.My son has it.He is loved and cherished

[@alesso9174]

My mom has it. I am wondering when is my turn.

[@katydid1600]

You might not have the gene.

[@alesso9174]

@@katydid1600 I like to believe that to. But something tells me I got it. Are you also at risk?

[@katydid1600]

@@alesso9174 No, Huntington's isn't in my family. My first husband and I gave birth to a son with cystic fibrosis, so we both have the CF gene. I will be praying for you to have a negative test result for Huntington's.

[@katydid1600]

Alesso, are you planning on getting tested anytime soon?

[@alesso9174]

@@katydid1600 No, but I kinda know I have it. I'll just wait for it

[@starlily3357]

I lost a Aunt because if this disease. She had several children and all are now dead because of it.

[@jodiebird1551]

All paid services need to improved their education and stop abusing kind family unpaid carers.

[@bettywith2girls]

Kid, 16 yrs old: Hi. Police? Yes, my mother tried to kill me by cutting me with a pizza cutter, is going to set the place on fire with her cigarettes, and physically prevents me from going to school. In fact, I had to have my mates there so my mom wouldn't attack me, and I've had to protect myself with a sofa cushion once to prevent her from hurting me. Police: Well, you're a lucky kid because we won't arrest you for "attacking" your mom with a sofa cushion this once, but don't do it again. She has Huntington's Disease so we feel sorry for her. We'll tell people to call us if she does end up killing you, because we know she is preventing you from going to school, so t-h-e-y won't know. Go home to your mother and good luck! Oh well, too bad for you! What?!!! Wow. Really?!!! I don't care WHAT illness she had...where were the people who were suppose to be protecting this kid??? And, as of this video, he actually forgave and was visiting his mother afterwards. Thank God he tested negative for the HD gene. Wow. Thank goodness he ended up in an OK living situation and reconnected with his relatives that his mom alienated. The people who were suppose to protect this kid sure failed him.