By Harriet Whitehead
A devastated dad has shared heart-wrenching footage of his three-year-old son who suffers more than 300 seizures a day after being diagnosed with two rare genetic disorders.
Parents Alan Alway, 32, and Holli Alway, 32, have been told to make memories with little Corey Alway while they can because doctors do not know what the future holds for the tot.
The toddler has required around-the-clock care ever since he was born two months premature as Corey’s conditions means he is at risk of suffering epileptic seizures and a brain haemorrhage.
At his worst, brave Corey would suffer hundreds of seizures a day once enduring 307 of the traumatic attacks which led to a five-month stay in hospital.
And heartbroken dad-of-one Alan, of Bude, Cornwall, fears his little boy may not live beyond eight.
Rock climbing instructor Alan said: “I have not found many children over the age of eight with similar conditions.
“The epilepsy changes as his brain gets more active. It works against the mechanisms of his brain.
“As he develops and wants to learn more but his brain does not want that. The epilepsy gets harder to manage.
“With Corey medicine and diet have stopped controlling it but it is not to say they won’t work again. It is so unknown but there are a lot of options. I have given up researching it now as it’s not helping me.
“We have been told to make memories particularly with the epilepsy – and he has had two unexplained bleeds in his brain.
“We are so lucky with the NHS, they look after him so well and closely monitor him. We are in the best hands and without the NHS I would not have Holli or Corey.
“But with these subdural bleeds, if one of them happens and it is massive it would be a brain haemorrhage which could be serious.
“Since we were told that we try and live each day. We are building lovely memories and we laugh a lot more than we cry.
“We like doing things outdoors. We are lucky enough that we live in Bude near the beach and can go out with the two dogs.
“Corey is looking forward to Christmas. He’s very excited – although he gets excited about everything.
“If you ask him about anything he says ‘yes’ and will squeeze his face up. Considering everything he has been through he is happy.”
At 32 weeks pregnant, first-time mum Holli was rushed to hospital suffering from Hellp syndrome – a life-threatening liver condition that can develop during pregnancy.
Corey, who weighed just 4lb 12oz when he was born, was whisked away from his parents straight away for emergency care.
Full-time mum Holli, who gave up her job as a lecturer to care for Corey, suffered post-traumatic stress disorder as she was so unwell she couldn’t see her son for five days after his birth.
Since his birth Corey has been diagnosed with chromosome abnormality 16p13.3 duplication syndrome and the rare, multisystem disorder Kabuki syndrome which can cause a number of abnormalities.
Until two months ago the tot was unable to hear properly while he is also prone to hernias, eye problems and stopped growing at the age of one due to the epilepsy.
Alan claims Corey could only hear the equivalent of being six to 10 inches under water before he got his special hearing band in October.
It is unknown if Corey, who is coming up to his 300th hospital appointment, suffers from these conditions as a result of his mum’s illness during the pregnancy.
Alan said: “When he was born Corey was taken straight up to the special care baby unit and spent six days in intensive care on all of the life support apparatus.
“Holli couldn’t see him for five days because she was still recovering and Corey was upstairs.
“Unfortunately her bed was next to other mums who were with their babies. It was so traumatic for her that she suffered from PTSD.
“After five days, Holli was still so poorly but crawled up to meet him. Since then it has been caring for Corey which has had a knock-on effect.
“To have a combination of these two conditions is unreported. Holli has been incredible. I just follow her lead.
“We have been told certain things or read stories where children with one condition have not done this or that – Holli has not taken that as gospel she just says ‘well let’s give it a go’.
“Where others have not walked we have done everything we can to get him walking.
“A psychiatrist did an assessment at 18 months old and Corey was so methodical when solving the problems he set for him. It blew us away.
“He is very switched on. It is his ability to express himself and tell us what he wants is where he struggles but that is getting better.
“He is so sociable and loving. He just wants to play and do stuff all of the time. When the hospital appointments come we make a day of it and have some fun.
“He is so used to it now. We go for blood tests and he will hold out his arm ready. He knows what to do when they look at his eyes. He’s very accommodating as he is so used to it.
“Since he’s had his hearing aid he has started talking. He’s really come on. He’s started putting two to three words together.
“When he heard properly for the first time it was brilliant. I noticed he could hear his feet. He would be walking around wondering what the sound was and it would be his feet.
“He is really into music. When we were in hospital for a long period of time my friend came in and played a song for us and Corey got a response from that. He could hear the high pitched guitar.
“We play classical music because he can hear the high pitches. Music has been a big therapy for him.”
The brave toddler’s seizures started in August 2015 and by Christmas that year, Corey could not go a day without suffering hundreds of the attacks.
The rare form of epilepsy Corey suffers from causes four types of seizures including drop attacks, absences, myoclonic seizures, which are shock like jerks, and tonic clonic seizures.
Corey was admitted to hospital in December 2015 to treat his seizures but did not get to come home until April as doctors discovered a huge bleed on the little boy’s brain.
Alan said: “His seizures started in August 2015 and in the October they started getting quite consistent. They started getting worse leading up to Christmas.
“He would try to stand up and would just drop. The absences are like daydreams. He was having hundreds of myoclonic seizures a day.
“We were in hospital from December until April. The week of New Year’s Eve they did an MRI to see if there was anything in his brain causing these seizures and they found a huge bleed.
“At the same time realised there was a lot of pressure on his brain. A craniotomy removed the bleed but he was still having these seizures which was down to the epilepsy.
“We were in for such a long time because the polymorphic intractable epilepsy was so uncontrollable. On one day he had 307 seizures.
“When he was in hospital they were trying different medication and he would have to be weaned off them each time. We tried three that did not work.
“The ketogenic diet where you remove carbohydrates and sugar was a successful for about nine months but the polymorphic epilepsy is incredible – it identifies what’s stopping it and overcomes it. It’s so hard to deal with.
“Corey did not grow for a year because of his epilepsy from the age of one to two and a half.
“We were not buying him any more shoes. His younger friends were giving us spare clothes but he was a year older than them.
“But the last couple of months we have noticed him growing – we’ve been buying him clothes and new shoes. They hope now the epilepsy is under control it means he is growing.”
Every few weeks, Corey, who has 12 consultants working with him, spends a week at Little Bridge House Children’s Hospice.
The tot has his own bedroom there and a carer who looks after his medicines so Alan and Holli can have a break.
The rest of the time Holli, who gave up her job as a college lecturer, is her little boy’s carer.
Holli said: “Corey is amazing and every day he does something that blows us away.
“There have been moments of living hell to be honest but the good times and the times when he made developmental progress – even if they are small for a healthy child they are huge steps for Corey.
“It is a different journey. It is not the journey we expected to be on but it is our journey and we are making it the best we can.”
The couple said the community has also been a big help with fundraising events helping to pay for a special bed for Corey who cannot sleep flat because of the pressure in his brain.
Friends and neighbours have held quiz nights, competed in the Lundy swim and done marathons.
And family friend James Dixon has written a song called Corey’s Crusaders which has also helped pay for a defibrillator for Corey.
The parents have also issued an appeal for anyone with a child or family member suffering from similar conditions to Corey to get in touch.
Alan said: “The community have done so much for us and we really want to thank them. The area we live in is incredible.
“I would like to know if there are people out there who suffer similar problems and have got to the age of 25, are in a job or are married.
“I would love to know that because it is so unknown and it would be lovely to hear from people who are leading normal lives.