Micah
The parents of a seven-year-old boy with life-limiting conditions say they are in a “better place” thanks to Rainbows.
When Micah was four-months-old, his parents Sheena and Jeneesh realised their son wasn’t developing at the same rate as other babies.
Two months later and completely unexpectedly, Micah suffered his first seizure. “He had been unwell all day, he kept vomiting and had a high temperature,” said Sheena. “That evening he was taken to hospital and he had a four hour seizure. He just wouldn’t stop. I was terrified, it kept going and going.”
Scans proved to be clear, and doctors told Sheena and Jeneesh they thought it may have been a febrile seizure, an infection or just a one off. But the seizures continued and Micah was eventually diagnosed with Epilepsy.
“In my head I thought great, now we know, we can look at fixing it. I didn’t realise just how many drugs there were,” said Sheena. “But by April, we were in hospital every other day with a seizure.
“It was exhausting but the adrenaline kicked in. We would get home and we would pack again so we were ready to go. We had so many lists and logistical procedures. We were also moving house so there was so much to do.
“One day Micah had back-to-back cluster seizures for 24 hours. They just couldn’t stop them. We then spent a whole month monitoring his seizures.”
Just before his first birthday, Micah’s tiny body gave up and he had a respiratory arrest. He then lost his suck reflux, and he had to be tube fed. “I felt that was the beginning of saying I have a special needs child,” said Sheena. “It felt very medical and we had to get used to a new way of feeding and all of the supplies in the house.”
Over the next few years, Micah was diagnosed with Cerebral Palsy, Dystonia and Scoliosis. He was referred to Rainbows in 2022 for symptom management.
“To hear the word hospice was scary and to think about going to Rainbows felt strange,” said Sheena. “But Micah was in so much pain and was constantly screaming and arching, we had to take him.
“Once we got to Rainbows, we were really encouraged to take some down time. It was such a surreal feeling, but it felt good. For once, I could just sit in my own thoughts and it was a great break for me.
“We have built a foundation of trust with the team at Rainbows and get to rest whilst they take on the caring role, the facilities enable us to be around, but not have to do things around the clock, knowing that we can turn our alarm clocks off and it’s ok.
“Micah had his medication changed and that really helped him too. Rainbows means we can relax; we don’t have to think about drugs and pain.
“We are in a better place because of Rainbows. It makes it an accessible world for us. Micah had never been swimming in his life but at Rainbows he can in the Hydrotherapy Pool. He can play on the adapted swings and park. And just to use one of the amazing baths, as we have a shower at home, is wonderful. These are little things people may take for granted but they are everything to us.
“In life, everything seems like a fight but at Rainbows it isn’t. You don’t have to prove anything, and Micah really enjoys it there.
“Going forwards, we don’t know what the future looks like. In September, he had an operation on his hip and his lung collapsed after surgery. At this time of year, he gets more chest infections, which doesn’t look good. He is in a lot of pain all the time and we have up and down days but we know we have the support of Rainbows.”
We are in a better place because of Rainbows. It makes it an accessible world for us. Micah had never been swimming in his life but at Rainbows he can in the Hydrotherapy Pool. He can play on the adapted swings and park. And just to use one of the amazing baths, as we have a shower at home, is wonderful. These are little things people may take for granted but they are everything to us.
