Just days before his fourth birthday, Farid Elshahawy was diagnosed with a rare and aggressive form of cancer.
Now, as he lies in his hospital bed undergoing gruelling treatment, Farid’s family are launching a campaign to raise hundreds of thousands of pounds to take him abroad for a vaccine which could save his life.
The brave Sunderland youngster is undergoing treatment in Newcastle’s Royal Victoria Infirmary, after the diagnosis of neuroblastoma in November.
He is undergoing high-dose chemotherapy, having spent eight hours in surgery to remove a tumour above one of his kidneys.
He will also undergo radiotherapy, with a 50% survival rate given to patients with the diagnosis.
It is hoped he will then enter a programme of immunotherapy, which aims to prevent the return of the illness.
We knew something was wrong, but we never expected to have to deal with this.Sherine Elshahawy
MRI scans will be carried out as his condition is monitored by the specialists.
The fundraising campaign will help collect the funds needed to pay for further treatment.
Donations have already begun to flood in to his appeal page thanks to Echo readers, with more than £1,800 raised so far.
Parents Ahmed, 36, who has put his PhD on information theory on hold, and Sherine, 30, who is studying pharmacy at Sunderland University, are by his bedside, along with their daughter Nelly, one.
Ahmed, who lives with his family in Thornhill, said: “He has been vomiting and has a temperature, he’s like a sick doll.
“Children, mostly, are stronger than us, but he knows he is sick and he knows we are protective of him.
“He understands what he is going through, he knows that he could be going abroad, but he also keeps asking every day if he can go back to nursery.
“I’ve told him one day he won’t have go to hospital and he keeps telling me he wants to go home.
“He has lines coming out of his chest and he gets very anxious.”
The family are being given lots of support from the Solving Kids’ Cancer charity, as they begin to collect funds and research the vaccine.
However, it is expected more money will be needed if Farid relapses.
The organisation says the disease is so dangerous and treatment options so limited, that they face having to raise vast sums of cash to access the treatment abroad.
Sherine added: “Farid is responding well to the intensive treatment he’s receiving at the RVI .
“There are clinical trials available overseas to help prevent the cancer returning, because neuroblastoma has a very real risk of relapse, which is difficult to treat and has a low-survival rate.
“We know a lot of parents in our position have gone abroad for experimental treatment – because like us they’re so worried.
“We are in total shock.
“We knew something was wrong, but we never expected to have to deal with this.”
Farid, who loves Pac-Man and football, was diagnosed with stage three high-risk neuroblastoma in the week before he turned four.
His mum had noticed a lump on his abdomen and he had also been suffering from sickness and a high fever, with a limp also causing concern.
After emergency treatment and further investigations, they were given the awful news of what had been making him ill.
His family have begun to receive donations from their friends and family and hope others will help, after they opened up about their heartache.
A hospital in New York is among those shortlisted to provide the treatment, with the charity and doctors to help the family decide when the time comes.
Solving Kids’ Cancer supports families affected by aggressive childhood cancers, and funds research into better treatments.
How to help
Fewer than 100 children are diagnosed with neuroblastoma each year in the UK.
Most are younger than five and its cause is not known.
In Farid’s case, he has stage three, which means the cancer has spread into surrounding organs and structures, but not too distant areas of the body.
Despite it being rare, it is still the second most common form of solid tumour in childhood and accounts for 8% of the total number of the disease in youngsters.
Neuroblastoma is a cancer of the specialised nerve cells called neutral crest cells, which are involved in the development of the nervous system and other tissues.
It most commonly occurs in either one of the two adrenal glands in the tummy, nerve tissue which runs alongside the spinal cord, in the neck, chest, abdomen or pelvis.
The adrenal glands are found above both kidneys. They normally release hormones to maintain blood pressure and help the body respond to stress.
In some cases, it can spread to tissues beyond the original site such as the bone marrow, bone, lymph nodes, liver and skin.
Symptoms can include and at first can be vague, from tiredness, loss of appetite and pain in the bones.
Further symptoms depend on where the cancer begins, from a swollen abdomen or constipation or problems passing urine; if in the chest, breathlessness and difficulties swallowing; deposits of neuroblastoma in the skin which appear as small, blue-coloured lumps; if pressing on the spinal cord, children may have a weakness in the legs and walk unsteadily; if they do not yet walk, they could have reduced leg movement.
Occasionally, they may have a jerky eye and muscle movement and unsteadiness and they can also have high blood pressure.
They can also establish whether it has spread.
James Calvert, research officer at Solving Kids’ Cancer, said: “A vaccine is a kind of immunotherapy treatment available at Memorial Sloan Kettering Hospital in New York.
“It is a treatment that acts similarly to a flu-jab – priming the immune system to resist neuroblastoma cells with a view to preventing the disease returning.
“This differs from Proton Beam therapy, in that it works throughout the body, whereas proton beam targets a specific site.”
Anyone who would like to donate to Farid’s fund can visit campaign.justgiving.com/charity/solvingkidscancer/faridelshahawy
They can also text “FAEL88” and the number of pounds to donate from £1 to £10 to 70070.