Oisin (pronounced "oh sheen") was born in April of 2013. We were over the moon; he was a beautiful and happy child and his parents and big sister were instantly in love. In September, Liz (Oisin's mum) planned to take Oisin and his big sister Aoife on a trip to visit his grandparents in Ireland. Greg (Oisin's dad) was going to stay at home because they couldn't afford to all go. Unfortunately Oisin didn't get to go to Ireland that year.
5 days before the planned trip Oisin started to make some strange jerking movements with his head and arms. We didn't know what was going on but were concerned so we took him to the hospital. After some observation, we were sent home; the paediatricians thought it was probably indegestion. 2 days later we were back at the hospital; the movements had become more pronounced and were happening more often. This time one of the paediatricians recognised what was happening: Oisin was having Seizures.
Oisin had developed and form of childhood epilepsy called Infantile Spasms. The next few weeks were a nightmare for our family. The hospital tried to aggressively treat the seizures with steroids while the conducted tests to determine what was causing them.
Oisin has Miller-Dieker Syndrome
It emerged that Oisin was suffering from a rare and devastating genetic condition called Miller-Dieker Syndrome.
We avidly read up on this condition and what we read was like a punch to the gut. We read that children with Miller-Dieker Syndrome have intractable epilepsy which becomes more complex and difficult to control as they get older. We learned that Oisin's mental age is likely to remained fixed at that of a 5 month old. And we learned that average life-expectancy for children with Miller-Dieker Syndrome is 2 years.
But we didn't give up on our beautiful boy. He is now 5 years old and we are planning on him living for many years to come. His condition does, however, present him with some challenges:
Oisin can't sit or stand unaided: he gets around strapped into a wheelchair and has a special frame that allows him to stand and a special chair that keeps him sitting safely. Apart from that we need to carry him (which he loves because he loves cuddles). Because he doesn't stand an walk, Oisin's hips haven't formed properly. Sometime in the next year, Oisin will be having an opperation where his leg will be deliberately broken and reset to fix his hips.
Oisin has multiple epileptic seizures per day: Sometimes they are just small spasms but often they are bigger and exhaust him. At times we have been unable to manage his seizures with medication and he has gone down hill - these are scary times for all of Oisin's family.
Oisin can't talk: but he loves listening to people and responds with delight to friendly voices. Recently one of Oisin's kinder friends told us "Oisin talks with his eyes."
Oisin can't feed himself effectively: but he loves giving it a go (with messy results). Oisin is always at risk of aspiration (where food or drink would go into his lungs) so we have to monitor his eating closely. Oisin is on a waiting list for a PEG (a feeding tube that will go directly to his stomach).
Oisin is more at risk from infection: a simple chest infection that the rest of us would combat with lemsip might put Oisin in hospital.
In short, Oisin is dependent on us for his every need. But through all of this, he is a very happy kid and we love him dearly.
We decided from the start to give Oisin as normal a life as possible. We involve him in all of our family activities; taking him wherever we go. He is enrolled in mainstream Kindergarten and has made some very good friends there.
We take him camping with us, to the beach and anywhere else the family goes and he loves it.
Recently Oisin had a one week stay in hospital with a chest infection. Greg stayed with him at the hospital for some quality father-son time. One night, someone lost control of their car and collided with our car which was parked outside the hospital.
Our family car was written off.
We have known for some time that we would eventually need to buy a wheelchair accessible vehicle for Oisin and have been putting money aside each week for years but we thought we would have a couple more years to save. Now we need to buy it with some urgency.
In the meantime, we have borrowed a car so that we can get around but we will have to give that car back eventually.
If you choose to donate to the fundraising effort, know that your donation will contribute to Oisin participating fully in our family's life and continuing to be the happy kid we know and love.
- Robyn Joore
- jim guerin
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