Adam Gould
Noah Gould’s fundraiser for Shooting Star Children's Hospice
Fundraising for Shooting Star Children's Hospices
Story
We doing a SPARTAN BEAST 21k run to raise money in memory of super Noah💪🏻💪🏻
Noah was a smiley, cheeky little boy that brought joy and happiness to all that met him.
At 5 1/2 months old Noah started to show signs that he was unwell. As parents we knew we had to act as his crying and discomfort was not him at all. We went to a&e where our lives changed forever. After being assessed Noah had a CT scan. They found a large brain tumour. He was put in an induced coma and rushed to GOSH as he had swelling in the brain which needed to be operated on urgently. A day later he was in surgery for over 8hrs. They removed 70% of the tumour and took a sample for biopsy.
Later that week we found out that Noah had a very rare brain cancer - ATRT (atypical teratoid rhabdoid tumor). This is an aggressive tumor of the central nervous system, occurring mostly in the cerebellum, the part of the brain that controls movement and balance, or the brain stem, the part of the brain that controls basic body functions.
Unfortunately this cancer is an aggressive beast which requires multiple rounds of chemo and radiotherapy.
Noah was too young for radiotherapy and chemo was barely on the table due to where this cancer was. However he was still showing us how strong and brave he was. Everyday was a struggle.
He was constantly fighting to manage seizures. He was back and forth between ICU ame HDU. Within 3 weeks we had been told that the tumour had grown back 3x faster than they expected. This was of course causing more pressure and pain on baby Noah. At this stage chemo would not help. It would prolong his sickness.
This beast continued to grow even when we made the decision to spend our last few weeks with him at the hospice.
Once we arrived at the hospice, the team greeted us all and made us all feel very welcome. Noah was being fussed over everyday which was lovely. We had plenty of family days here. We had a picnic, went swimming, had a beach outing which were things that we were due to do before he got sick.
We always said we would take Noah to Disneyland when he was older. Knowing we couldn’t do this, the hospice arranged for Disneyland to come to us. Noah’s Disneyland arrived on Wed the 7th of June. Noah wasn’t feeling all that well that day, he had been declining over the last 48hrs, but made an appearance where he met Winnie the Pooh - his favourite and of course Mickey and Minnie Mouse too.
Noah sadly passed away peacefully in mummy and daddy’s arms later that evening.
We are so proud of our little solider. He was so brave and so strong right to the end. We are incredibly proud to have him as our son who will always be in our hearts. his brief battle with this beast was 6 very long and hard weeks. We are in awe of what our super Noah was dealing with. If it wasn’t for the Hospice, GOSH’s efforts along with other charities help and support then we wouldn’t have had the special memories and time with our baby boy.
We are trying to raise money for the hospice and those that helped us along the way by doing all sorts of events. The first being a 21k Spartan race with our ‘Super Noah’ team.
Thank you all for your support xx
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Shooting Star Children's Hospices cares for babies, children and young people with life-limiting conditions, and their families across Surrey and London.
Whether lives are measured in days, weeks, months or years, we are here to make every moment count. We support families from diagnosis to end of life and throughout bereavement with a range of nursing, practical, emotional and medical care.