Community rallying round Larne baby with craniosynostosis

The mother of a 10-week-old baby boy from Larne, who has the birth defect, craniosynostosis, has thanked the local community for supporting her family since news of his condition was made public.

Friday, 13th November 2020, 12:52 pm
Updated Friday, 13th November 2020, 1:00 pm
Alexander. Pic contributed by Marina Fulton.

Marina Fulton, whose son Alexander Fernandes has the condition which sees the bones in a baby’s skull join together too early, has praised members of the public for backing a fundraising drive to collect money for surgery.

Speaking to the Times, Ms Fulton said: “We are trying to get Alexander over to Great Ormond Street Hospital in London for surgery as soon as possible.

“It will cost £14,000 to get the procedure done privately. It is available on the NHS, but due to Covid, it is taking a long time to get a referral. Alexander ideally needs the surgery at four months old.

Marina and Alexander. Pic by Warren Blair.

“Alexander was born on September 1 in the back of an ambulance- the delivery was quite fast!

“His eyes were slanted, but I thought it may have been caused by the birth. When I was in hospital a few weeks later, a paediatrician said Alexander should be examined.

“I then was in touch with Alder Hey Hospital and sent pictures of Alexander’s head to them. They verified that he has the condition, although he is non-syndromatic.”

Ms Fulton added: “We have set up an online fundraising page to try and collect the funds for Alexander’s surgery. So far we have over £4,500 in a short space of time. We need the money by the end of this month and then we’ll be able to get a date with the hospital.

“If we exceed our target, we’ll use the money for helmets which cost thousands. If there is any left over, we will donate this to charities to support other people in our position.

“I’ve tried to get an appointment at Great Ormond Street to be seen face-to-face, but lockdown restrictions are causing issues and the price of flights from here to London is currently extortionate.

“I can’t praise the NHS enough. They are working extremely well under pressure, but Covid is putting such a strain on the system that we’re running out of time for Alexander’s surgery and private is the best option for us.

“I wish to thank everyone who has supported us. The Larne community has really helped us. Even during these tough times, it’s fantastic to see this community spirit- it’s lovely.”

If you would like to support the fundraising campaign, visit the JustGiving page


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