Ayaan and our journey with Pitt Hopkins 

Ayaan continues to work hard in all his therapies including Occupational, Aqua, Music, Physiotherapy and most importantly Speech & AAC! Ayaan tries very hard to speak to us but his countless efforts but unfortunately we have had very few unclear words. We are confident he will get there with the intent he has to speak to us and tell us what he feels. In the meanwhile, we are grateful that his therapists work on an AAC app (Augmentative and Alternative Communication) and basic Ayaan sign language where he can often request for what he likes, tell us how he feels and demand to watch his favourite shows and play his games. 

Through this journey Ayaan has taught us how to be fearless, limitless and this has made us so much stronger. With his resilience, determination and amazing gusto for life we are always living life on a natural high. His positivity paired with his love and affection gives us so much confidence to imagine the impossible to become possible.

PTHS – Gene Therapy and how you can support the journey 

Ayaan has a mutation of the TCF4 Gene that is the cause of his development delays. At both conferences we learnt that there was tremendous amount of research being put into the research and trials for PTHS Gene Therapy. We are blessed to learn that the trials have taken off in early 2026 in the USA. 

This could potentially be the answer to many children who are dealing with similar challenges as Ayaan. We would like to request you to help us raise funds for this cause. Any contribution towards this (big or small) will make a huge difference to this cause. With this funding, the foundation would be able to achieve their goals towards more research and other positive outcomes.

We are thankful to the entire team of PTHS Foundation for doing so much for our kids. We feel truly blessed and are grateful that we have this support group of all the lovely families and also have access to some of the best medical practitioners that specialize in this field. The acceptance and facing this diagnosis was not easy and did take us some time. However, we are in it for Ayaan and just like any other parent we would do all that we can to make his life better.

Thank you for taking the time to listen to our story. Ayaan is blessed to have such good people in his life. We are optimistic that this can be achieved and Ayaan will benefit from this in the near future!

Our mantra continues to be what Ayaan teaches us daily – “Onwards and forward”

With much hope and gratitude,

Vinod & Anu