A devoted father who helped prolong his terminally ill daughter’s life has spoken of his pride after she passed away aged just 10.
Isabel Annakin, of Cleeton Way, suffered from metachromatic leukodystrophy, a disease that left her unable to speak, walk or even swallow.
“She is gorgeous, a lovely little girl,” said father Neal. “I just wanted to celebrate every year we have had her and to make people aware of her condition.”
Neal Annakin described his daughter as an inspiration to everyone who met her.
“I’m going to miss her so much,” he told the Bridlington Free Press.
Isabel celebrated her second birthday and was delighted as she opened her presents and blew out her candles. However, her life changed drastically during the 24 hours following when she was taken to the doctors with stomach pains.
Doctors told Neal it was bad news with Isabel suffering from a rare genetic condition that affects just one in 40,000 people. Neal and Isabel’s mother Karen were both carriers of the defective gene and were told their daughter would only live until her fourth birthday.
Metachromatic leukodystrophy affects the growth and or development of myelin, the fatty covering which acts as an insulator around nerve fibres throughout the body.
Neal spent hours researching his daughter’s rare condition. After contacting a family in America, he discovered a drug that had not been used in Britain to treat the condition.
Propranolol is a beta blocker that is normally used to treat hypertension and angina.
“I told the doctor and he agreed to start her on it,” said Neal. “As it slows the production of adrenalin, it stopped Isabel from getting so agitated. I feel that is a big reason she is here today.”
Neal, who gave up work to become Isabel’s full-time carer, organised a big birthday party each year and cherished each day with his only daughter.
He said: “It just puts everything into perspective when she was able to still be happy despite everything she was going through.
“What can we really moan about? She is just such an inspiration.”
Isabel was a student at Kings Mill Special every afternoon and enjoyed to exercise in its swimming pool.
She received 24-hour care every day from a team of four Barnados staff as well as Neal.
Melissa Hardcastle, a Barnados disability worker, said: “Isabel just brightened up everyone’s lives.
“She was such a fun little girl and we will never forget her. I feel privileged to have worked with her because she is so special and so inspiring. Everybody can’t believe what she went through.
“She is a little Bridlington superstar.”
Isabel passed away at Scarborough Hospital on June 21 after suffering a cardiac arrest at home in Bridlington.
“I was absolutely heartbroken,” said Neal. “You can’t prepare for it and she is going to be such a huge loss to a lot of people.
“I’ve had a great deal of help with looking after my little girl including my partner Sherry and all the doctors and nurses. I’d like to thank them for all their hard work and dedication throughout Isabel’s life.”
Now Neal is hoping to fundraise in order to cover some of the costs for the celebration of his daughter’s life.
If you would like to donate, email Neal on firstname.lastname@example.org or on the Just Giving fundraising page (link needed but not sent
Isabel’s funeral will be held at the Priory Church on Friday July 8 at 2.15pm, followed by a service at Sewerby Road Cemetery at 3pm, and concluding with a wake at 3.45pm at Rags Restaurant.