For those long standing Forumites from the 2016-2017 era, you may remember the fun we had with Zedward, the huge Teddy bear. and his travels around the UK in members cars !
The original thread is here : https://z4-forum.com/forum/viewtopic.php?t=86795&hilit=zedward
However, there was a far more serious side to Zedwards exploits and that was the fund raising objective, for a young 14 year old Surrey girl, called Lauren Holding, who suffers from a very rare digestive disorder, meaning that she was unable to eat or drink properly by mouth and was having all her foods via tube, direct into her stomach. She was aiming to raise £30,000 in order to have a Gastric Pacemaker fitted in the hope that it would go some way to curing her illness.
Following Zedwards travels, we were able to contribute just over £2,500 towards her cause. With lots of Anniversary memories cropping up on people's Facebook accounts, I recently contacted Laurens Mum, to see how she is doing nearly 5 years on.
This was her Mums reply...
Hi Alan
Thank you for reaching out and I hope this email finds you well.
Lauren’s story has been a challenging one and fraught with many iterations of intervention.
She is however well, though unfortunately still not able to tolerate oral intake and is fully reliant on pumps and tubes for all her nutritional and fluid needs. Attempts to reverse the situation (largely thanks to the help of the fundraising) we’re disappointing but we were extremely grateful for the opportunity to explore this route. She is currently flipping between a more discrete stomach tube placement and the nasal tube whilst they work out the best option moving forward.
Over the past 5 years it has become apparent that research and funding into gastroparesis and it’s association with Elhers Danlos syndrome is sadly lacking. Probably rightly so as in the scheme of things, there are far more cases of cancer, diabetes, heart disease etc and this is predominately where the funding is directed. I have personally been fortunate to have been able to donate and fund raise for GIFT (gastroparesis and intestinal failure trust) and Lauren is hopeful that there are some breakthroughs in the next few years which might help her (and now unfortunately her sister) further.
In the meantime Lauren is now 20 and an inspiration and role model - resilient, full of positivity, has a real ‘can do’ attitude and zest for life despite the real challenges she faces on a daily basis and the multiple hospital attendances.
Lauren currently works full time as an HCA at our local hospital and manages her feeds and medication regimen around her 12 hour shifts. She is shattered most of the time but enjoys working in the hospital environment and caring for others. She did want to be a paramedic and managed to secure a place at uni to study paramedic science but sadly didn’t get occupational health clearance from the ambulance trust.
Thank you to everyone for all you have done to support Lauren - whilst there has been no cure, she was enabled the best shot at what was on offer at the time. The gastric pacemaker research and development is being improved all the time and her consultant is confident that if a development is made that he feels will be of benefit to her she will be able to be considered for a future attempt under NHS.
As I said above, Lauren’s older sister has now also unfortunately developed gastroparesis (previously she had only the joint pain and frequent dislocations associated with her EDS) and so in my mind the genetic link is clear. What medical science can offer my girls in the future is unknown but for now they are positive and strong warriors.
Jo x
Lauren has since grown into a beautiful young lady despite her condition, but continues to seek answers and medical breakthroughs, along with her Sister.
Fund raising has changed direction slightly now. Rather than being an individual fund specifically for Laurens Operations, the family are now concentrating on raising funds for the research, in the form of GIFT (Gastroparesis and Intestinal Failure Trust) so if anyone would like to contribute to help these two lovely girls it would be much appreciated.
The link is here: https://www.ehlers-danlos.org/help/make-a-donation/donate/
Personally, I can't imagine not being able to eat or drink normally. It's such a basic pleasure that we all take for granted on a daily basis.
Finally, on my behalf, I'd like to thank everyone who took part or donated back in 2016-17. The support was fantastic whilst being great fun and for a great cause as you can see.
Thanks again,
Alan
The original thread is here : https://z4-forum.com/forum/viewtopic.php?t=86795&hilit=zedward
However, there was a far more serious side to Zedwards exploits and that was the fund raising objective, for a young 14 year old Surrey girl, called Lauren Holding, who suffers from a very rare digestive disorder, meaning that she was unable to eat or drink properly by mouth and was having all her foods via tube, direct into her stomach. She was aiming to raise £30,000 in order to have a Gastric Pacemaker fitted in the hope that it would go some way to curing her illness.
Following Zedwards travels, we were able to contribute just over £2,500 towards her cause. With lots of Anniversary memories cropping up on people's Facebook accounts, I recently contacted Laurens Mum, to see how she is doing nearly 5 years on.
This was her Mums reply...
Hi Alan
Thank you for reaching out and I hope this email finds you well.
Lauren’s story has been a challenging one and fraught with many iterations of intervention.
She is however well, though unfortunately still not able to tolerate oral intake and is fully reliant on pumps and tubes for all her nutritional and fluid needs. Attempts to reverse the situation (largely thanks to the help of the fundraising) we’re disappointing but we were extremely grateful for the opportunity to explore this route. She is currently flipping between a more discrete stomach tube placement and the nasal tube whilst they work out the best option moving forward.
Over the past 5 years it has become apparent that research and funding into gastroparesis and it’s association with Elhers Danlos syndrome is sadly lacking. Probably rightly so as in the scheme of things, there are far more cases of cancer, diabetes, heart disease etc and this is predominately where the funding is directed. I have personally been fortunate to have been able to donate and fund raise for GIFT (gastroparesis and intestinal failure trust) and Lauren is hopeful that there are some breakthroughs in the next few years which might help her (and now unfortunately her sister) further.
In the meantime Lauren is now 20 and an inspiration and role model - resilient, full of positivity, has a real ‘can do’ attitude and zest for life despite the real challenges she faces on a daily basis and the multiple hospital attendances.
Lauren currently works full time as an HCA at our local hospital and manages her feeds and medication regimen around her 12 hour shifts. She is shattered most of the time but enjoys working in the hospital environment and caring for others. She did want to be a paramedic and managed to secure a place at uni to study paramedic science but sadly didn’t get occupational health clearance from the ambulance trust.
Thank you to everyone for all you have done to support Lauren - whilst there has been no cure, she was enabled the best shot at what was on offer at the time. The gastric pacemaker research and development is being improved all the time and her consultant is confident that if a development is made that he feels will be of benefit to her she will be able to be considered for a future attempt under NHS.
As I said above, Lauren’s older sister has now also unfortunately developed gastroparesis (previously she had only the joint pain and frequent dislocations associated with her EDS) and so in my mind the genetic link is clear. What medical science can offer my girls in the future is unknown but for now they are positive and strong warriors.
Jo x
Lauren has since grown into a beautiful young lady despite her condition, but continues to seek answers and medical breakthroughs, along with her Sister.
Fund raising has changed direction slightly now. Rather than being an individual fund specifically for Laurens Operations, the family are now concentrating on raising funds for the research, in the form of GIFT (Gastroparesis and Intestinal Failure Trust) so if anyone would like to contribute to help these two lovely girls it would be much appreciated.
The link is here: https://www.ehlers-danlos.org/help/make-a-donation/donate/
Personally, I can't imagine not being able to eat or drink normally. It's such a basic pleasure that we all take for granted on a daily basis.
Finally, on my behalf, I'd like to thank everyone who took part or donated back in 2016-17. The support was fantastic whilst being great fun and for a great cause as you can see.
Thanks again,
Alan
