The priest came to read him his last rites. We didn’t know if he’d make it through the night, it was horrendous. With immediate family gathered around his bedside, we spoke quietly to Jake, told him what we had been up to, our hopes and fears, spoke about the new house in Ireland with his own bedroom and bathroom, how things would be great.
Jacob is 16 years old and has been battling with spinal tumours for eight years – over half his life. Lucy Air Ambulance for Children was asked to fly Jacob to Ireland. Read his story here:
In 2011, at only eight years old, doctors found extensive tumours on his spine. He was able to have the tumours removed but it left Jacob paralysed. Adrian, Jacob’s dad says:
It was heart-breaking to see an active eight year old go into hospital walking and then be transformed literally overnight into a person who would be dependent on a wheelchair for the rest of his life. This was such a difficult realisation for both Jake and our family.
Adrian says that Jacob “took disability on the chin” and returned to school. He got the bus to and from school every day with his friends, started to play wheelchair rugby and even scaled a mountain.
In early 2016, following a routine procedure, the family received the devastating news that the tumour had not only returned, but had in fact spread into his brain. Jacob immediately began a long course of different treatments and therapies to reduce the tumour, however, it had started to affect his immune system resulting in numerous bladder, chest and skin infections and sepsis twice.
Jacob would have died on over twenty separate occasions were it not due to immediate medical intervention. Jacob’s mum and I have performed CPR on our son on three separate occasions with his brothers and sisters looking on. No family should have to go through that.
After eight years of specialist treatment and care, sacrifice and commitment from the whole family, Adrian and Emma decided to make a final push to improve Jacob’s quality of life. They decided to move the family out to Wexford, Ireland, where they will be closer to family and where Jacob can enjoy a slower pace of life. Their new home is fully adapted for Jacob and he will have access straight in to the garden from his room so that he can enjoy the clean, fresh air.
It will be a new start for us all. We look back on what we have been through as a family and we now just want some normality. We believe this move will give us all a better quality of life – especially Jacob.
Whilst organising the move, Jacob became ill again. He developed a severe chest infection which resulted in him being dependent on respiratory support 24 hours a day.
Following Jacob’s discharge from hospital in February 2019, Jacob’s family were told his days were numbered. Adrian says:
We kept him comfortable but his oxygen requirement rocketed and he was on continuous anti-seizure medication for five days. The priest came to read him his last rites. We didn’t know if he’d make it through the night, it was horrendous.
With immediate family gathered around his bedside, we spoke quietly to Jake, told him what we had been up too, about our hopes and fears, spoke about the new house with his own bedroom and bathroom, how things would be great.
In true Jacob fashion, he surprised everyone and defied the odds. He became less dependent on oxygen and started to get stronger each day. He started to speak and his cheeky character started to return. “Plans to move were back on track again”, Adrian says.
Amongst the arrangements, the family faced the big logistic issue of moving Jacob to Ireland. Although Jacob had shown great progress, he was still mostly bed-bound, receiving palliative care and heavily dependent on oxygen. Adrian and Emma looked in to lots of travel options including a ten hour journey by road and ferry but none were viable for Jacob. The doctors advised the only way for Jacob to travel to Ireland would be by plane, but to charter a private medical flight that could carry Jacob’s specialist equipment bed would cost the family a lot of money.
Apprehensive about the cost but determined to do the best for Jacob, Adrian and Emma decided to start arranging the private flight. In February 2019, the whole family moved in to Demelza House Hospice so that that Jacob could continue to receive treatment until they could afford to pay for his flight.
For the family, Jacob’s flight was more crucial now than ever. Adrian says:
“The move is at a difficult time for Jake’s condition but you can’t plan for it – one minute he’s great and the next minute he’s very poorly. We can see him improving every day and think a calmer pace of life would help that.”
Lucy Air Ambulance for Children was contacted and the Charity heard Jacob’s story. Knowing how urgent the flight was for the family, Lucy Air Ambulance for Children (Lucy AAC) quickly confirmed they would be able to help fund Jacob’s flight enabling him to fly to his new home. Adrian and Emma were over the moon that Lucy AAC were able to “facilitate Jacob’s safe passage to a new life”. A huge weight had been lifted and they could finally start looking forward to their next chapter.
Jake flies this week – we will keep you updated as to how he and his family are.