A Co Antrim mum is on a fundraising mission for her newborn son who was born with a rare condition.
Alexander was born with Craniosynostosis, a condition where the bones in his skull fuse together far earlier than they should.
If left untreated, Craniosynostosis can lead to serious complications, including blindness, head deformity, increased pressure on the brain with possible neurological damage.
In order to try and get help for her son as soon as possible, Marina Fulton has launched a fundraising effort so he is able to get treatment in England before he may have to require a more invasive surgery.
She says signs of the rare condition were only spotted in her son following a chance encounter with a paediatrician when she was visiting the doctor. They noticed Alexander had an unusual shaped head, but following examinations were still not able to determine what was wrong with him.
Even after x-rays, doctors still could not pinpoint exactly what condition the young boy had. Then after doing her own research and speaking to other parents online she was told her son could possibly have a form of Craniosynostosis, and this was later verified by a specialist at Alder Hey Hospital in Liverpool.
Marina said: "Prior to Alexander being born we had no clue he would develop this condition. The pregnancy went really well and he seemed so excited to meet the world that he was born in the ambulance on the way to hospital.
"It wasn't until a paediatrician noticed the shape of his head that we suspected something might be wrong, and after series of tests doctors couldn't seem to figure it outeither.
"I became very worried about what might be wrong and did my own research and spoke to other parents online, where I was pointed to a possible form of Craniosynostosis. There are no specialists in this condition in Northern Ireland as far as I’m aware.
"As I understand it the specialists usually come over to see patients at Belfast Children’s Hospital but due to Covid-19 this isn’t currently possible, so we have to take him to specialists in England for the surgery.
"Now I am just trying to see what treatment I am able to get him as soon as possible, because if it is treated quickly then he can have a less invasive procedure than other surgery option he would require."
Marina has launched a fundraising effort in order to try and get Alexander treatment in England when he is four months old. She is hopeful the procedure could become available to her on the NHS, but she fears that due to the Covid-19 pandemic it may not be possible.
She said: "I am trying to raise £20,000 which will be able to get Alexander a treatment privately in England, along with some special helmets he is going to need.
"If we are able to get the treatment funded on the NHS, then I will be donating the money for the treatment to charity in the hopes of raising more awareness about this condition.
“This surgery is not available to all currently due to Covid. Often the more invasive option is offered at 15 months of age. Because it is so rare and there are no specialists here in Northern Ireland, children who have Craniosynostosis can often be diagnosed very late.
"If it is not treated it can lead to very serious problems for a child.
“It is estimated that around one in 3,000 births can lead to Craniosynostosis with boys more affected than girls, so it is important that we here in Northern Ireland are able to detect it sooner.
"I am very grateful to everyone who has been able to support us so far, as we have managed to raise more than £4,000 in the past week but we still need more to get Alexander this surgery, before it’s too late."
If you would like to donate to Marina's campaign for her son please follow this link.
