Navan mum of boy (5) with rare cancer makes plea for help to get treatment in US
The distraught mother of a young boy from Navan who is battling a rare and aggressive form of cancer has made a desperate plea for help in securing her son life saving treatment in the U.S
When Ravhia Javed’s five-year-old son Nahyan complained of pains in his legs she thought he had hurt himself on his trampoline but just days later was devastated when he was diagnosed with Metastatic Neuroblastoma, a high risk stage 4 cancer that attacks the bone and bone marrow and has survival rate of only 40%.
The brave youngster is at the end of a grueling 18-month treatment plan including chemotherapy, a stem cell transplant, surgery to remove a tumour, radiation, immunotherapy and even spent time in Germany receiving proton radiotherapy, a treatment unavailable in Ireland.
Thankfully Nahyan is now cancer free but there is a 60 percent chance that the cancer will return. His family are hoping to raise €375,000 to get him on the Bivalent Vaccine trial at MSK Cancer Center in New York the only paediatric tumour vaccine in existence to “give him a chance at life.”
Mum Ravhia says the family has been “through hell and back” since their “real life superhero” received the devastating diagnosis last year. She added:
“He is finishing his second round of immunotherapy at the moment, and he has five cycles in total. He is doing well but has a very high rick of relapse and every child with Neuroblastoma in Ireland has gone for treatment abroad.
“It gives him a chance at life, it will stop a relapse and that’s what we want.
“If a child relapses there is no known cure or treatment that works so we are desperately trying to get him on the vaccine trial.
“We can’t think of anything else, we have to get him better, this has been our life since he was diagnosed.”
When little Nahyan began to have pains in his legs, his mum Ravhia and dad Naveed thought had just hurt himself playing on the trampoline but could never have imagined the harrowing news doctors would tell the shell shocked parents days later.
“In May 2020 he was playing on the trampoline and when he came home he said my legs are hurting so we thought maybe he was just playing on the trampoline and got hurt and we took him to Drogheda Hospital.
“He stayed there for a week and they did a lot of tests and x-rays and they found a tumour in his chest which had spread to his bone narrow and his bones.
“We were moved to Children's Health Ireland at Crumlin where he was diagnosed with Metastatic Neuroblastoma and we were given an eighteenth month treatment plan.
“At first it was so hard because when you search on google it is so scary because Neuroblastoma has a very bleak outcome. He was so small and it was stage four and there was only a 40 percent chance that kids respond to treatment and even if they do there is a strong chance it will come back.”
Nahyan older brother to Azlan (2) is responding well to treatment but many challenges still lie ahead for the little boy as his doting mum explains:
“He is responding really well to the chemotherapy and the transplant, but it has been hard. Since the first chemotherapy he is not eating anything, he has no appetite, he is tube fed at night and has all kinds of side effects.
“He hasn’t been able to go to school and he wants to go but he is always in hospital even when the treatment finishes, when we come home, he gets sick and we have to go back because there is some kind of infection or vomiting or he gets dehydrated.”
Little fighter Nahyan has a very special reason to get well according to the Navan mum.
“He is being very brave, even when he is vomiting and I’m looking after him he says thank you for doing this for me.
“He loves military tanks and says that he is going to be a soldier when he grows up and he keeps saying that he wants to be strong and wants to get big.”