‘I never expected that Jacob had just months to live’
For any parent, losing a child is an unimaginable horror. But sometimes the unimaginable happens – Jacob Wright died when he was just 16 months old. GEMMA GARDNER spoke to his mum, Claire, following her moving speech at a carol concert in support of East Anglia’s Children’s Hospices.
"Jacob's death is the saddest thing that has ever happened to us, and will always be, but his legacy is one of complete positivity."
In February 2012, Claire and Bob Wright's lives fell apart. They were told that after being poorly for five months, their son Jacob would probably not see his second birthday.
Jacob had a genetic disorder called mitochondrial disease. It had no treatment and no cure. He was 16 months old when he died.
"There is not a word in the dictionary to describe the level of sadness and pain we felt right then but other emotions we felt were confusion and feeling alone,Claire said."We knew we had to make every moment we had left count but with this big dark abyss in front of us how could we go on?"
Jacob was born in December 2010 with a cataract in one eye and some mild hearing loss but the family were told not to worry.
"I felt he was behind in his development and he wasn't doing the things his friends did. But everyone told me not to worry - I was a first-time mum and I shouldn't compare him to others,Claire said.
"But I didn't give up,she added.
At about eight and a half months old, Jacob got a cold. He became lethargic and less alert. He was struggling to eat and that everyday task would wear him out.
His symptoms got worse - and while at a physiotherapy appointment he started to make
"He was shrugging but in a repetitive pattern,explained Claire, who now works with The Lily Foundation, which funds research and raises awareness of mitochondrial disease.
Jacob was diagnosed with a form of epilepsy called infantile spasms.
"I just knew that wasn't it,said Claire."I just felt absolutely hopeless. We put Jacob in his bouncer and I just remember feeling cold and dreadfully miserable, and little do I know it was going to get so much worse."
Jacob's fits increased to the point where he was having 20-minute seizures up to 20 times
- day and night.
"You think that poor little sausage - he was doped up on quite horrible drugs and we don't know how he felt. He was too little to tell us.
"We took it in turns to sleep with him at night. We used to sleep with one hand underneath him so if he had a seizure during the night it would wake us and then we could count it to make sure it didn't go over 20 minutes.
"It started to take everything from Jacob. He couldn't hold his head up. He didn't use his hands. He spent most of his time asleep. It took away his voice. He didn't cry. He stopped smiling. He stopped laughing. It took everything."
Doctors gave Jacob a high dose of steroids because it had been known to stop seizures in other children.
"For about three days, he got his voice back. My sister was playing with Jacob with some bells and all of a sudden he started laughing
and for about three or four days he was back."
But after he came off the steroids, Jacob's condition deteriorated and in February he was diagnosed with mitochondrial disease.
In nearly every cell in the body, mitochondria are responsible for producing energy. They are like power stations, supplying the energy every cell needs to function.
If our cells do not have energy, then the tissues or body organs created from those cells simply do not function properly.
"There is not one word in the dictionary that can describe how devastated we were. I mean you just expect doctors to be able to sort stuff out. I knew he was poorly. I knew that life was going to be tough for him but I didn't expect them
to say that we would only have months left.
"But as well as feeling just devastated and helpless and hopeless, you feel a failure because you can't do anything. And that's your job as a mum.
"No one talks about death and it is just this big scary horrible thing that you just know nothing about and yet it was our reality.
That's when the family got a lifeline. Their specialist nurse referred them to East Anglia's Children's Hospices (Each) at Milton.
"We were invited for a tour and as soon as we walked through those doors I felt love and hope,said 42-year-old Claire."It was like getting a hug the minute I walked through the doors. We discussed Jacob coming for a visit and we were then asked if we had any questions.
"We had so many. What would it be like when he died, would we have to leave him alone, how did you organise a funeral? They answered those and so many more.
"They couldn't take away the pain but the minute I walked out of those doors I knew that I was no longer alone and we didn't have to do this by ourselves.
"Ironically when we left the hospice there was a beautiful rainbow and we all looked at it and we all cried. But we all knew that there was a little bit of hope. It was never going to end nicely but at that moment we knew there were people who would help make it as good
Sadly, Jacob never made it for that visit and died aged 16 months at Addenbrooke's.
After his death, the couple were given the option to take him directly to the hospice.
"I remember walking through those doors, my son in my arms and being taken into his room. We surrounded him with the things he loved, his duvet, pillow, teddies and books. We got to stay just a few short steps away, got to hold him, kiss him, wash and dress him in his favourite pyjamas."
Jacob stayed at the hospice until his funeral.
"We got to be parents to the very end. I can't imagine having to say goodbye to him any earlier,
The couple has continued to receive"incrediblesupport from the hospice.
"They're there forever,she said."They've taught me to live with my grief. I hate it when people say time is a great healer. It's not. But what they've allowed me to do is grow around that grief.
"I miss him terribly. I still cry about it and I still have moments where you think 'Why me?' But then why not me? These things happened. And that's the gift they've given me - that I can feel like that.
Jacob would have turned six earlier this month.
"He has made me a better person,a tearful Claire, who lives in Sutton, explained."But that experience and everything
we've been through, and that's partly the hospice, it's made me a better person.
"Every day he is part of my life. He's raised £35,000 since his death for various charities. He has given me a new focus, he has raised awareness of things like the hospice. He does the most amazing things and he changed people's lives and all of that is only possible because I'm strong enough because I've had that support. It's the most amazing place. You never want to use that hospice but when you need it, you need it.
"Jacob will continue to be a massive part of our lives forever.
"I'm determined that nothing about his life or death is going to be negative because he was beautiful and he was the perfect little boy and he was so strong.
"We're going to carry on doing that in his memory.
"For someone who was so small and was only here for 16 months he's had a massive impact and I'm determined that he'll do that forever.
Through The Lily Foundation, Claire supports other families and helps to raise awareness for both the foundation and Each.
"There's someone out there today whose been told the worst news that you can imagine. And I can't take that pain away from them, you need to go through that pain but if I can do anything it's that as hopeless as life feels at the moment in time, it really isn't. You just need to grow around it.
"It doesn't go away and it doesn't get better. But you really will be OK. You will smile again
and you will laugh again, and you'll always be a little bit sad, but you will be OK. There is
"You don't have to give up on life - you just have to learn to live a new one."