“Two years ago we were told to make an end of life plan for our three-year-old son which was totally out of the blue for us. It was so scary. So final.”
This was the situation for Lara North and her former partner, Mark Osborne, after learning their son Jaylen, had Dravets Syndrome - a rare, catastrophic, lifelong form of epilepsy with frequent and/or prolonged seizures.
Jaylen is now six and although the family, from Rushden, don’t know what the future has in store, they certainly don’t dwell on it. Instead, they spend time making valuable memories. “We don’t know what each day holds, we live each day to the next,” said Lara. “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. 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 he was 10-months-old, he had a very high temperature and was told it was tonsillitis,” said Lara. “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. 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 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 and knew they had found a special place. Lara said: “I was a bit wary at first. I was glad Jaylen was going to get support. 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.”
Jaylen’s prognosis is still unknown. “As he has gotten older, more and more diagnosis’ have been added on to the list and things have got more and more complex,” said Lara.
“We don’t like to think about it but we always said we wanted him to be at Rainbows when the time comes as it is nicer environment,” Lara said. “He is happy there and he has made a lot of memories. Rainbows is a very special place.”