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.

@supportahcuk

3 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

How terribly sad. I really feel the parents pain and sadness. I truly hope a cure can be found. God bless this family 🙏

@abehl

Күн бұрын

Thank you for your kind words 🙏

Beautiful, sensitive portrait of what having AHC means for the everyday lives of Anya and her parents. As Subhash says, immensely moving.

@supportahcuk

3 жыл бұрын

Thank you michael. best wishes 🙏

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.

@supportahcuk

3 жыл бұрын

Thank you Nick for your kind words :-)

@abehl

Күн бұрын

Thank you for your kind words 🙏

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!

@abehl

Күн 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.

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.

@abehl

Күн бұрын

Thank you for your kind words 🙏

Mi hijo padece AHC. Este video nos refleja todo lo que vivimos cuando él era pequeño.

@supportahcuk

3 жыл бұрын

Thank you Mili for your comments and hope your son is keeping well ?

@abehl

Күн бұрын

Thank you for your kind words 🙏and lots of love and wishes to you and your son.

Incredibly moving. An amazing record.many thanks for sharing.

@supportahcuk

3 жыл бұрын

thank you 🙏

@abehl

Күн бұрын

Thank you for your kind words 🙏

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

@emmachambers6452

3 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

@abehl

Күн 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

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.

@abehl

Күн 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

"... because it's not profitable." I am so, so sorry that this is the case.

@abehl

Күн бұрын

Thank you for your kind words and yes, its very true that it will never be profitable.

Immensely moving ! Sometimes God can be so unkind ! Such a sweet child and this problem!!

@supportahcuk

3 жыл бұрын

Thank you mamu & wishing you a very happy birthday

@deirdrecurran1780

23 күн бұрын

So heartbreaking, I hope things have improved for this family.

@abehl

Күн бұрын

@@deirdrecurran1780 Thank you for your kind words 🙏

She is beautiful

@abehl

Күн бұрын

Thank you 🙏

Precious parents. ❤ Beautiful child . Lord please heal her in jesus name.

@abehl

Күн бұрын

Thank you for your kind words and prayers 🙏