How terribly sad. I really feel the parents pain and sadness. I truly hope a cure can be found. God bless this family 🙏
@abehlАй бұрын
Thank you for your kind words 🙏
@drumminwoman5646Ай бұрын
"... because it's not profitable." I am so, so sorry that this is the case.
@abehlАй бұрын
Thank you for your kind words and yes, its very true that it will never be profitable.
@glendafield9797Ай бұрын
Oh you very wonderful parents, I wish for you to have a huge amount of support, and Kia kaha. Kia kaha is a Maori saying from New Zealand, where I live. It means, stay strong. We say it to out children and grandchildren also.
@abehlАй бұрын
Thank you for your kind words 🙏 and especially Kia kaha - we as a family just love New Zealand and sending you our wishes x
@alli138Ай бұрын
She is beautiful
@abehlАй бұрын
Thank you 🙏
@Mabel-wi6fyАй бұрын
Precious parents. ❤ Beautiful child . Lord please heal her in jesus name.
@abehlАй бұрын
Thank you for your kind words and prayers 🙏
@TheMissmaryjane172 ай бұрын
It's not much, but I am hosting a fundraiser for this awful disease this weekend. Hope we can gather money to help in someway!
@abehlАй бұрын
Thank you and that's very kind of you. Please do post in your fundraising link and would like to share it with all our AHC supporters.
@micaelabrooke18587 ай бұрын
'Promo SM' 😔
@jacquelineneis97392 жыл бұрын
The immense pain, joy, and uncertainty of a family dealing with AHC is powerfully displayed here. I pray this short film increases awareness while growing compassion for the AHC community. My niece has AHC and while is was challenging to watch in some ways, I am grateful for this sweet family’s vulnerability.
@abehlАй бұрын
Thank you for your kind words 🙏
@emmachambers64523 жыл бұрын
God Bless you all 🙏 i can totally relate.....unfortunately my daughter was mis diagnosed for epilepsy and cerebral palsy right up to 16 years of age....massive mistake from nhs from 4 years old for 12 years community paediatrics lost her in system so only had paediatrics consultation from hospital specialist who was absolutely understanding and listened to me as mother all way through in regards to her seizures and really going to miss him. This leaves us with new genetics test done late called by community paediatrics after losing her in system for 12 years to now having Definite ATP1A3 gene mutation literally as changing over into adult care from paediatrics with not much information but loads more questions after research from my part....looking like AHC syndrome result from mutation......looking at videos with my heart breaking yet feeling an connection and feeling like I'm definitely on right path for getting answers now....my daughter now 19 but covid and slow appointments with not many experienced in knowledge of this illness has delayed this so far....cannot believe this has not been picked up on especially the weakness quadriplegic and long non breathing episodes and especially the rapid eye movements.....definitely not usual rolling of eyes and tonic clonic usual seizure activities....but actually eyes shaking like this long vacant transient episodes from 4 weeks old in 2002 in which was sent away as over protective mother....and moving on to calling ambulance by 10 weeks old as vacant blue episode changed into full tonic clonic and my fears coming true really awful.....can imagine our hospital still having no one consultant being experienced in this field to tell difference from hemiplegic episodes to actuall epileptic episode as my daughter would not have been mis diagnosed....more awareness about this genetic mutation and syndrome needs raised that's for sure ....sending our love completely ❤ xx
@emmachambers64523 жыл бұрын
My daughter has severe scale learning and physical disabilities i believe she was like this before birth looking back now and not met many who have as severe complications.....i have learned of flunarizine and torpiamate ....torpiramate being mention in gene mutation discovery letter which i will be seeking answers for hoping they may help further for the hemiplegic episode as opposed to her anticonvulsant medications.....let me know if you would like any contact we are uk also 🥰🙏 Xx
@abehlАй бұрын
Thank you for your kind words 🙏 So sorry to hear about your daughter and our heart goes out to you and your family. It's great you have connected with us at AHC UK and it would be nice to meet you, your family and especially your daughter one day in person. With best wishes x
@Twinmama-pg6eo3 жыл бұрын
My daughter was diagnosed with AHC in May 2019. The last 3 weeks she has declined and I watch this in tears. I’m exhausted and she’s exhausted. I’m so sorry that any child has to suffer through this.
@supportahcuk3 жыл бұрын
Thank you, Kimberly. Our heart goes out to you and your daughter and hope you can get some respite. AHC is such a terrible condition & our AHC Champions are such an inspirations to us all xx
@emmachambers64523 жыл бұрын
How do get referred to a neurologist on NHS that is experienced with AHC for an Adult who has been misdiagnosed with cerebral palsy and epilepsy until had genetics test resulting in atp1a3 mutation later in life....now pointing towards definitive AHC at the age of 19 years old....as no-one seems to have any knowledge of this disease or moving us in the right direction to anyone that does?
@supportahcuk3 жыл бұрын
Thank you for your kind message - You should certainly get in touch with our AHC UK adult family liaison person. Why don't you get in touch with [email protected] and we will be happy to support and help you in the right direction. Thank you for getting in touch !!
@nickjowett13423 жыл бұрын
A very affecting film, well made, revealing a great deal in a short span - the many difficulties this family face and yet the positives of love and the small moments of delight.
@supportahcuk3 жыл бұрын
Thank you Nick for your kind words :-)
@abehlАй бұрын
Thank you for your kind words 🙏
@m.toolan68783 жыл бұрын
Beautiful, sensitive portrait of what having AHC means for the everyday lives of Anya and her parents. As Subhash says, immensely moving.
@supportahcuk3 жыл бұрын
Thank you michael. best wishes 🙏
@subhashkapoor92163 жыл бұрын
Immensely moving ! Sometimes God can be so unkind ! Such a sweet child and this problem!!
@supportahcuk3 жыл бұрын
Thank you mamu & wishing you a very happy birthday
@deirdrecurran1780Ай бұрын
So heartbreaking, I hope things have improved for this family.
@abehlАй бұрын
@@deirdrecurran1780 Thank you for your kind words 🙏
@gillreddick13393 жыл бұрын
Incredibly moving. An amazing record.many thanks for sharing.
@supportahcuk3 жыл бұрын
thank you 🙏
@abehlАй бұрын
Thank you for your kind words 🙏
@milisabeh97683 жыл бұрын
Mi hijo padece AHC. Este video nos refleja todo lo que vivimos cuando él era pequeño.
@supportahcuk3 жыл бұрын
Thank you Mili for your comments and hope your son is keeping well ?
@abehlАй бұрын
Thank you for your kind words 🙏and lots of love and wishes to you and your son.