Thanks for taking the time to visit our JustGiving page. We are raising money for the Gastroenterology research team at Great Ormond Street Hospital.

Our happy, vibrant, ever smiling, son, Aashil Hirani, passed away on the 27th January 2013, four days before his first birthday.

His happy soul masked the physical pain that he endured every single day. This is his story.... 

For those that knew Aashil, know that he was the happiest baby in the world. His beaming smile would light up a room wherever he entered. Although he was happy, this happiness hid a deadly condition that lived inside of him. The doctors described it as a fire that raged on the inside. Aashil’s condition meant that he could not feed like normal babies, he was fed intravenously using a system called Total Parenteral Nutrition - a direct feed to the heart. This coupled with the cocktail of medication Aashil was on, could not eliminate the internal inflammation or the visible external ulceration. Sadly the sight of blood and deep ulcerations when changing nappies was a daily reminder of the enduring suffering.  It was difficult for us to understand how somebody so sick could yet still be so happy. He really was our special boy. During frequent hospital admissions doctors, nurses and even cleaners would all come and play with him on their breaks. His strength and happiness provided them relief from the stresses of hospital life.

The condition Aashil suffered from, a gene defect, was rare. So rare that there were only 22 reported cases worldwide. Aashil was now the 23rd reported case. You have better odds at winning the lottery. We felt like the unluckiest parents in the world. But we were secretly blessed. There was hope. Within the last 3 years, due to the tremendous research effort at Great Ormond Street Hospital, researchers had discovered a cure for this and similar deadly diseases that had cut so many young lives short. Using a bone marrow transplant Aashil could not only be treated but ultimately cured for life. We were blessed. We had won the lottery.

Finding a bone marrow donor is difficult, especially if you are of asian origin. Families wait years, even decades for a match. Time which we did not have. We, however, were once again blessed. Tests were to prove that Anay, Aashil’s older brother was a perfect match. This against the backdrop where a sibling match is not guaranteed. We were lucky. Aashil was in the best possible position to be finally cured with minimal risk.

Aashil successfully completed the transplant and progressed through the most riskiest and dangerous stages of the treatment, naturally smiling. He was finally cured. His symptoms were visibly gone. The doctors said Aashil had a 100% transfer, meaning all his cells were now good. After 8 weeks of treatment, we were on the final leg and could now prepare to go home ......... but Aashil did not make it home. We are still unclear of the exact causes of Aashil’s passing away but there were complications in the final week. Complications which were to be fatal.

Although our story does not have a happy ending, we were fortunate that thanks to the ground breaking research done by the gastro team at GOSH, we were offered a very real cure for Aashil, a chance at life. Unfortunately, the same cannot be said for many of the gastro patients that frequent the hospital. For many, treatment and even diagnosis is a distant dream. However with your support through donations, the gastro research team will be able to continue making breakthroughs and discovering cures for these complex conditions. Your support will create the opportunities for other gastro children to also have the best chance at life.  

Please view this short video published by GOSH and staring baby Aashil  

 

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