Ishaan

We are the parents of two beautiful boys, Advay and Ishaan. We welcomed our younger baby, Ishaan in September 2021 after a healthy and happy pregnancy. Ishaan thrived well as a newborn, however we started noticing mild developmental delays when he was 5 months. He was started on Physical Therapy at 6 months and simultaneously we began a series of tests to diagnose the underlying condition causing this.

On May 11, 2022 our lives changed forever. Genetic testing gave us a diagnosis of Pitt Hopkins Syndrome, which doesn’t have a cure today. The news was devastating to say the least – there hasn’t been a moment since then when we don’t think about him and the prognosis of this condition.

This isn’t something any parent can plan for, but we learnt how special, full of love & happiness our little champ is. His unrelenting spirit reminds us everyday to be grateful for the little things in life.

We began our journey in living with an ultra-rare disorder. In the months post his diagnosis, we visited multiple doctors, practitioners and therapists in the pursuit to provide him the best.

We empowered ourselves with knowledge of this condition, connected with the families of ~1000 individuals globally who were diagnosed with Pitt Hopkins and also the Pitt Hopkins Research Foundation.

We also learnt about the ongoing research to find a cure for Pitt Hopkins and the great work being done by the foundation to support these research initiatives. This gave us tremendous hope for a better future for Ishaan. His life will always be more challenging and different than that of typical children. But, this research could change that.

Without critical funds to help propel research into the next stages of development, there will be no success in bringing a cure for this severe syndrome. This fundraiser page has been set-up in honor of our little fighter Ishaan and will be pledged to the foundation to support the research work. We hope that the day will come soon when we have a cure which will change Ishaan’s life and the lives of future generations too. From the bottom of our hearts, thank you for spending time to do this and keeping Ishaan in your thoughts.

– Raji & Girish

Donate today in honor of Ishaan!

Donate via Credit Card Donate via PayPal

Extraordinary ElizabethAiden
X