The family of a schoolboy with an incurable brain condition are determined to make his dreams come true as they face an uncertain future together.
Callum McGilligan’s heartbroken mum is drawing up a ‘bucket list’ to create memories with her nine-year-old son after he was sent home from hospital.
The North Tyneside family hope to start by taking their son to the Harry Potter studios in London, reports the Newcastle Gazette.
Callum’s family also today expressed frustration at the lack of research going into Alternating Hemiplegia of Childhood, the one-in-a-million condition which has shattered her son’s life.
Helen McGilligan said: “Because it’s so rare, there’s no research. They just know it’s incurable.
“We feel like we are walking on egg-shells all the time, not knowing when Callum is going to take a turn for the worse.
“Now we just want to create as many good memories for him as we possibly can. He is a little boy at the end of the day and we want him to enjoy his life as much as possible.”
The family are now aiming to raise awareness of the condition, cash for the hospital where he is being treated, and money to help make Callum’s various wishes come true.
Helen, 50, of Longbenton, North Tyneside, said: “He is Harry Potter mad and would love to visit the studios in London so we are trying to sort that out.
“We would also like to take him to see Shrek the Musical. All of these things are about giving him the best we can.”
Callum had been a keen and talented ice hockey player until he started suffering ‘funny spells’.
Tests followed, but doctors told the family, including dad Alex, 51, they were baffled by Callum’s condition.
Eventually Alternating Hemiplegia of Childhood was diagnosed and medics discovered the right side of the youngster’s brain had been damaged leaving him with the educational capabilities of a four-year-old.
AHC is a rare neurological disorder that can leave sufferers paralysed. Chest infections and flu can be fatal to those with the condition.
Callum has spent the past four weeks in hospital after suffering a chest infection which left him fighting for his life.
The family, including elder siblings Matthew, 30, Alexander, 18, and sisters Claire, 27, and Faye, 22, are now keeping a check on him back home as he tries to recover.
Helen added: “Because we never know what the next day is going to be like, we just live day-to-day.
“We keep asking “why him?” but you can’t live your life that way.
“We now just hang onto the little things and as long as we can see him smiling, that’s enough for us.
“He really is the most lovely little boy and he warms to everybody – I think it’s his red hair that people love.”
Faye, Callum’s sister, is holding a fundraising event at the NE6 suite in Walker, Newcastle, between 12pm and 3pm on March 8.
Faye said: “Funds raised on the day will be split between AHCUK, Great North Children’s Hospital and also CCDI Which is Callum’s wish fund.”
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