Mum of Rushden boy with rare epilepsy says they 'just take each day as it comes and hope for the best'
Two years ago, a Rushden couple were told to make an end of life plan for their three-year-old son.
Lara North and former partner Mark Osborne had just learned that their son Jaylen had Dravets Syndrome - a rare and catastrophic lifelong form of epilepsy which causes frequent and/or prolonged seizures.
Jaylen is now six and although the family don't know what the future has in store, Lara focuses on living each day to the next.
"I am very conscious that we try not to think about the future, we just take each day as it comes and hope for the best," said Lara.
"Jaylen is an extremely happy little boy, probably the happiest child I have ever met.
"To look at him you just wouldn’t know there was anything wrong."
Jaylen’s problems first developed after birth when he struggled to feed and slept a lot.
When her son was 10 months old with a very high temperature, Lara was told it tonsilitis.
But soon after a scary episode at home Lara would discover Jaylen had epilepsy.
"I went to bed and I heard this noise, like a scream but nothing like I have heard before. He was blue and violently fitting," said Lara.
"We thought he was dying; it was horrendous to see. I didn’t know what to do.
"I wanted to hold him but I wasn’t allowed to until he had stopped fitting."
Scans finally revealed Jaylen had epilepsy and he was treated with medication.
But this struggled to control his seizures and each week, he was in and out of hospital with illnesses including sepsis, pneumonia and tonsillitis.
His lungs have become damaged and he relies on oxygen when he sleeps. He is also fed through a tube.
"Jaylen also has severe developmental delay," said Lara.
"We were told he might never walk and that was hard.
"We weren’t prepared for any of it. We didn’t know the extent it would go to.
"But when he finally mastered the skill we were so proud.
"Then a few months later, Jaylen had a seizure which lasted for two-and-a-half hours and he lost the ability to walk - it took him six months to get it back."
In May 2016, the family first visited Rainbows Hospice for Children and Young People in Loughborough and knew they had found a "fantastic" place for Jaylen.
His family are now encouraging people to support Rainbows’ Christmas Appeal and help families like theirs.
Lara said: "Rainbows is fantastic. Everyone is so helpful and provides support for the whole family. You don’t see the sad things, it is very happy and the staff genuinely care.
"Jaylen has certainly won a lot of hearts.
"He loves Rainbows; as soon as we pull up he starts signing play and swim."
Rainbows Hospice relies almost entirely on donations to ensure families like Jaylen’s receive the support and care they desperately need.