Oliver and Evan were born 1 month prematurely 1 minute apart on the 19th March 2008 by emergency c section. Both twins were slightly jaundice but were well. All seemed well and the twins were able to come home at 6 days old. On day 10 Oliver stopped breast feeding and slept all day. By 7am the next day we were in A & E as Oliver had symptoms resembling Meningitis. A lumbar puncture was performed on Oliver, who showed no signs of meningitis but he developed a rash underneath his arms. Evan then started showing signs of being unwell and stopped feeding so both were taken to HDU (High dependency Unit) in the paediatric ward in Morriston Hospital, Swansea. Both twins were treated with a broad spectrum of antibiotics to cover various infections and placed in incubators to treat a low temperature.
To cut a long story short, I then became ill myself and the staff in the paediatric ward found a bed for me and gave me paracetamol for a high temperature. At around 8pm Oliver suffered a massive seizure and arrangements were made to transfer him to Heath Hospital in Cardiff. I was transferred to Singleton hospital in Swansea and Evan remained in Morriston Hospital. Jason (daddy) travelled to Cardiff with Oliver as he was the most critical. Evan was transferred to Singleton hospital to be with me and was treated with various drugs to build his strength up. I was discharged the following day and went straight to Cardiff where we had the devastating news that Oliver was severely brain damaged. It would later be diagnosed as Quadriplegic Dystonic Cerebral Palsy. No answers could be given as to why and what had happened to cause this but our main priority was to get him home safe and well. Evan was allowed to be transferred to Cardiff to be with his brother and also to be with me as I tried to continue to breast feed. Evan and Oliver continued to improve and 3 weeks later were able to come home.
It was a relief to get home as Joseph our eldest had just turned 2 and spent his birthday in hospital with us so he deserved some of our time and attention. Unfortunately, with twins and Oliver’s diagnosis it was very hard to give him ANY attention and we had to rely heavily on friends and family for support.
Now at the age of 6 Oliver is completely dependent with all of his needs. He cannot sit, stand, walk, and talk. A few years ago he had an operation to insert a feeding tube into his stomach and no longer needs the NG tube. This obviously made his life more comfortable. He shows signs of interaction. We think his eye sight is improving and is learning to make choices by eye pointing. Unfortunately, at the age of 3 Oliver developed Epilepsy which caused continuous agitation and we didn’t think we would see Oliver smile again. However, we have tried numerous medications and although we haven’t quite got there yet, his seizures are far less and he now has many great days. Oliver is also having an operation in 2015 where a pump will be inserted into him and connected to his spine which will release a medication for his spasms. This should dramatically improve his quality of life.
Evan at the age of 6 is extremely bright and goes to main stream school. However, he is unable to walk unaided without a walking frame and finds it hard to sit independently. On a bad day he uses his wheelchair which limits him. His spasticity affects many parts of his life mainly because he can’t walk but also it affects his speech too. He tends to take shallow breaths and tries to say sentences as fast as he can under one breath. He finds it hard to use a knife and fork and small things like washing his hands is hard. He needs support to help with his toileting needs and needs lifting into the bath. He does dress himself but needs help with socks. He has to wear splints everyday as he walks with both feet turned in and walks on tiptoe dragging his feet behind him. As a result of this Evan goes through a new pair of shoes every three weeks. It breaks our hearts and we find it so hard when Evans cousins or friends come around and they play outside and run back and forth. Evan knows he can’t keep up and gives up and becomes withdrawn. This is when he decides to switch the computer on or play on the games console. He seems happy in his own little world but we know that he would love to be able to do what his brother does. Joseph plays Rugby and Football and is very active; we have still yet to find something which Evan can enjoy actively.
Our dream is for Evan to be able to kick a ball about with Joseph in the back garden or to be able to walk along the beach and feel the sand in his toes!!!! With the help of an operation called S D R which is now being performed in Bristol, Evan will hopefully achieve these goals. It's not currently funded by the NHS in Wales which is why we need your help in raising money to pay for the op. We hope in time this will change but for now this is our goal to raise £40k to cover physiotherapy expenses too after the op.
I hope this gives you a better insight as to why we are raising money for our little monkeys.
Thank you for taking the time to read this.
Nikki and Jason and family xx