Latest news...
Ryan's progress...
The rarity of Ryan's condition, and the lack of medical research carried out into Alpers' Disease, means that the consultants have predicted that Ryan will depart from us within the next two years.
As his parents Anne and David battle to secure the research funding in the hope of finding cures and treatments for Alper's Syndrome, you'll be able to read about their experiences here. There isn't anything meaningful that can be done for Ryan himself, but Anne and David hope that their experiences and struggles will benefit future sufferers of this dreadful disease.
Please check back regularly to find out more about Ryan's life and his parents' tireless campaign to raise awareness of Alpers' Syndrome.
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UPDATE ON THE RYAN STANFORD APPEAL
24th February 2010
The Ryan Stanford Appeal was set up on the 16th October 2009 in order to raise money to fund medical research into Alper's Syndrome primarily, however mitochondrial disease projects would also be considered as a second option.
We have now visited the lab at Newcastle, who played a major role in diagnosing Ryan as having Alper's, and they have advised us that they would be willing to carry out a research project specificially into Alper's Syndrome.
They have now suggested us following a slightly different course of project, being a three research project undertaken by a PhD student, overseen by the three key members of the team, and this would cost us £15,000 per year.
If we can raise over £10,000 by easter, we intend to "give the go-ahead" to Newcastle enabling them to begin their interview selection process and the project would begin this October!
The Appeal has come on in leaps and bounds since October last year, the appeal stands at over £8,200!
Thank you to everybody who has supported us so far! Please spread the word!
19th March 2010
Just a quick note to let everybody know that the appeal now stands at £9,050! There are events being set up and you will soon be able to donate to the appeal online via the "Contact" page - watch this space!
13th June 2010
Our appeal now stands at £15,400!!
8th January 2011
The appeal now stands at a massive £47,000!!!
We are able to accept online donations via this website and we have over 400 fans on our appeal Facebook page.
Thank you to everybody who has helped out or donated in any way. Your help is much appreciated!
We are able to accept online donations at www.justgiving.com/ryanstanford where you are able to make one-off or regular monthly donations to the appeal and you can even set up your own fundraising page for the appeal.
Huge thank you to the Garstang Courier, Lancaster Guardian, Focus Magazines, Lancaster Visitor, Local Choice Magazine, Bay Radio and Diversity FM for publicising our appeal so far. We couldn't do this without your help!
13th September 2011
The appeal has now reached just over £60,000 which is absolutely incredible and has gone far beyond our wildest dreams in the 23 months which the appeal has been running for.
There are far, far too many people to thank individually for all of their hard work, commitment and generosity. We are eternally grateful to you all.
We now have 653 fans worldwide on our appeal Facebook page - our appeal is supported by people in the United States, Norway, Canada, Spain, Australia, Ireland and the United Kingdom.
The appeal has introduced us to such a wide spread of wonderful people, many of whom we hope to remain lifelong friends.
One year of Alpers research in now completed at the Mitochondrial Research Group at Newcastle University and this weekend, we look forward to presenting them with a further cheque for £8,000 for the second year of the "Fight Alpers" research project.
Online donations can be made to the appeal via www.justgiving.com/ryanstanford where one-off or regular monthly donations can be set up or you can even set up your own fundraising page for the appeal.
To all individuals, companies, advertisers............. - the appeal would not be where it is today without the support from all of you - thank you so much. We will hold your kindness in our hearts forever xx
11th November 2011
At the end of October, the Ryan Stanford Appeal celebrated its 2nd anniversary. To date, the appeal has raised over £64,000! Amazing effort by all who have helped make this amount possible! Thank you for your support and please help us to continue raising funds to find a cure against Alpers!
UPDATE ON RYAN
16th February 2010
At nine months old, back in May 2009, Ryan was a happy little boy - starting teething, able to stand up with little support, rolling around everywhere and starting to talk - just like most babies his age. We could never have imagined what was hiding around the corner!
Ryan caught the Norovirus bug and was admitted into our local hospital, the Royal Lancaster Infirmary (RLI), for dehydration because he could not keep anything down. He was discharged a few days later and everything started to go back to normal then on the following Saturday, Ryan had his first seizure. Ryan was rushed back into hospital via resus in the A & E department - his first seizure lasting one hour. He remained an inpatient for two weeks whilst they carried out EEG's, a CT scan and an MRI scan and several blood tests. He also lost his vision for up to four days following this seizure. He had not suffered any further seizures during this time and was discharged exactly two weeks later.
Unfortunately, that same night he was discharged, Ryan suffered his second seizure and we rushed him back into hospital. This time, they could not stop it! The doctors tried everything they could to stop them but eventually had to put Ryan into an induced coma and transfer him down to Royal Manchester Children's Hospital at Pendlebury, into intensive care.
The intensivists at Manchester did not think Ryan stopped fitting from the Saturday night until sometime on the Monday and he remained in intensive care for nine days. As soon as he came out of the coma, everybody noticed Ryan doing lots of twitches all the time (up to 20 hours a day at his worst) and nobody could understand why he was doing it. He would not drink his bottle, wasn't moving about as before and could not support his own head - it would flop over if you weren't supporting it.
During our three month stay in hospital, Ryan's case was discussed amongst many clinical professionals and he had many tests - many EEG's, MRI scans, blood tests (of which the Mitochondrial Research Group at Newcastle were testing), skin biopsy, a VER (Visual Evoked Response), an ERG (Electro Retina Gram), an upper and lower limb SSEP (Somata-Sensory Evoked Potentials) and an ultrasound scan. He was fed via an NG tube (nasogastric) for a period of time and was not really interested in any solid food. In September, Ryan had a gastrostomy operation which has now enabled him to be fed directly into his stomach.
Ryan was blessed with an amazing team of consultants and specialists, both in Lancaster, Manchester and Newcastle - and whilst I do not want to name them personally on this website without their permission, they know who they are and we shall be forever grateful to them all for everything they have done for us. Had this team not been involved in the care of Ryan, I am sure that we would still not know what is wrong with Ryan. The diagnosis is not good but at least we can make the most of the time that we have left with our son and are not trekking backwards and forwards to the hospital everyday.
Since we brought Ryan home from hospital, his twitching has reduced, he will never be able to talk, walk or move around like most children his age and still cannot hold his own head up but he still remains able to see, laugh and smile. He is able to spontaneously move his legs and arms on a good day but not "on demand".
Ryan suffered a slight setback when he fell ill with bronchiolitus, followed by a perforated ear drum - both in the first week of December. It has taken him 6-8 weeks to recover fully from this and he is now getting back to his smiley, happy self again which is great to see!
13th June 2010
Ryan is doing really well at the moment. He continues to twitch most of the time but his twitching is still much less than he experienced during the early onset of his symptoms. He is moving his arms and kicking his legs about more at the moment so we are extremely pleased!
15th January 2011
Over time, Ryan has gradually developed his own personailty - he loves being sat on your knee all day getting ALL the attention, giggles when he is tickled and gives really big grins whenever you pull him close for a cuddle! He loves watching his cartoons and Disney films, having books read to him and having nursery rhymes sung to him.
He also learnt that if he cries his "inconsolable cry", he will always get picked up and cuddled. He is very aware that this would get him all the attention he wanted.
Developmentally, he is behind with his teething and I think it has been so much more of an issue than a "normal" child because he does not bite down on any food, teethers, dummy etc. To date, Ryan has just cut his 6th tooth with 2 or 3 others about to cut - I spoke to a couple I know who have a little boy aged approximately 2-3 weeks older than Ryan and I was told that he had a full set of teeth with the exception of 1!
He does pick up viral infections occasionally and we do find any additional illness particularly hard to shift but what can you expect when he probably has such a low immune system now.
13th September 2011
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 from other 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."
