Neve Seeley

Ryan suffered a significant deterioration on the 24th April 2011 - he really didn't look himself at all and I took him into Royal Lancaster Infirmary. On that first day, he was running short of oxygen and was given many epileptic drugs over the course of the Sunday and Monday to the extent that four of the doctors wanted to transfer Ryan back down to Royal Manchester Children's Hospital (RMCH) in an induced coma. I must say that our feeling, as Ryan's parents and full time carers, was that Ryan's increased epileptic movements were probably Ryan's new "acceptable norm" and that we did not want him to go through all of this. Thankfully, a source from RMCH supported us as she remembered Ryan from two years previous. Unfortunately Ryan's deterioration has meant that he has now lost his vision, he does not seem to laugh or cry anymore, he rarely smiles and when he does on a seldom occasion, it only seems to show on one side of his face. Even though, over time, Ryan has still not recovered these responses which most other people take for granted, we are extremely thankful that he has now stabilised again and does not generally show that he is in any pain.

It's heartbreaking to see him twitching or upset sometimes because we know that he will never get fully better and that at some point in the future, his condition will deteriorate to a point where his body is no longer capable of retaining his life however we are also so grateful that we have been able to enjoy Ryan for such a long time now since his diagnosis in a relatively good condition - something which we value so much after hearing so many horrific stories fromother Alpers families who have had their children stolen so quickly.....

IN MEMORY OF NEVE SEELEY

I would really like to express the importance of our appeal and remind everybody who is supporting it that this is not just about Ryan but also other children out there too!!

Neve Seeley 24/06/08 - 15/06/10

Ian and Sam, Neve's mum and dad, have become an integral part of the appeal since finding that their daughter had been diagnosed with Alpers.

They, along with their friends and family, have raised over £10,000 for the appeal so far and are giving so much time to supporting the appeal in every way possible.

They, like us, truly understand the importance of this research project into Alpers Syndrome. I have received their permission to publish you their story:

"Neve was a happy, healthy little girl with a captivating smile and a love for everyone.

Neve was taked into hospital on 28th April with an ongoing seizure - the hospital couldn't stop it and eventually she was placed in a coma on life support and transferred to St Mary's PICU where she stayed for 10 days.

A Mitochondrial Disease was suspected but the hospital continued with EEG's, MRI's, CT Scans, Ultrasounds, 4 Lumber Punctures and numerous blood tests. Eventually, they performed a muscle and skin biopsy and they advised the results would take 6-8 weeks.

We were finally given the results of the biopsy on the 9th June, Neve had Alpers Disease - the doctors predicted that she would only have days, maybe weeks to live.

Neve lost her battle with Alpers 6 days later on the 15th June - she died peacefully in our arms 9 days before her 2nd birthday."