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Michelle Pearson raised £1,940 from 34 supporters
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Closed 29/01/2018
Weʼve raised £1,940 to help fund equipment needed for Seren and Jack Luxton who are suffering with Ehlers-Danlos Syndrome.
- Plymouth, United Kingdom
- Funded on Monday, 29th January 2018
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Story
Dear Friends
As some of you probably already know, Alan and I have decided to run the Plymouth 10km. We have had lots of information sent to us from various charities but felt we wanted to help someone a little closer to home.
My cousin Hayley is a mum to three children, two of which have Ehlers-Danlos Syndrome (EDS). Daily life is very difficult and it has certainly put ours lives into perspective when writing this email. Obviously there are good days and bad days but unfortunately the good days are followed by several bad ones.
It's hard to share someone else's story so I asked Hayley to describe a day in the life of someone facing this cruel disease.
"They tend to wake up at about 5.30am, they are usually in pain and very stiff so I have to help them get down the stairs by either guiding them or carrying them down. They watch a DVD until its time for breakfast and then get ready for school. They both have medication each morning consisting of paracetamol, ibuprofen and a tablet to line their tummy’s so the medicine doesn't rot the lining. They have special wedges to wear in their school shoes as both children have flat feet, they also need to wear boots with a supportive ankle as their ankles are weak and they have a tendency to ‘go over’ on them.
They start school with all the other children each day but by the third lesson of the day they are usually very tired and need to lie down. It takes EDS sufferers 10 times more effort to sit up than their friends. At midday their teachers give them another dose of medicine and they go to a quiet room for their lunch to enable them to eat their lunch slowly and rest. When I collect them after school they are usually in a very bad mood as are extremely tired and in a lot of pain. If they need more medication this is the time I will administer another dose.
When we arrive home it is time to relax and have dinner, this is followed by some physio and more medicine before going to bed. Seren (6 years old) has a special mattress to sleep on with lot of quilts - she is like the Princess and the Pea!!!! They both go to sleep quite well but wake up a lot in the night due to the pain. This will mean more medicine or a massage. Their pain is very bad at night as when relaxed their little bodies can displace a lot easier, a bit like a rag doll”.
What Hayley hasn't included about her day is that she is the main carer so is the one up in the night and getting up with them each morning, I think she gave me a brief, toned down version as I know it can be a lot tougher than that most days. She never complains and is always the first to put a smile on peoples faces.
So what is Ehlers-Danlos Syndrome? Ehlers-Danlos Syndrome is a connective tissue disorder that effects the production and use of the body’s collagen and there is currently no cure.
The common issues faced by EDS sufferers are
*Chronic pain and fatigue
*Joint dislocations and subluxations
*Easy bruising
*Compression fractures
*Chronic depression
*Chronic headaches
*Joint hypermobility
*Degenerative disks
*Bladder and bowel issues
*Elastic, fragile and/or soft skin
*GERD (Gastroesophageal Reflux Disease) and allergy issues
*Vascular fragility and aneurysm
*Dental complications
*Heart defects
*Scarring
*Slow wound healing
Unfortunately, the list goes on.
EDS symptoms are varied in severity and are different for each person. I think you would agree just having just one of those symptoms would cause a lot of concern and upset especially if the person affected was your child. To have two children living with EDS is unthinkable especially given they are currently only 4 and 6 years old.
Seren was given her diagnosis a couple of years ago which does mean they get a little help but Jack hasn't yet had his condition formally confirmed hence there is no help for him at the moment. Unfortunately he is the one struggling with his symptoms the most. If that wasn't enough to contend with Hayley’s 13 year old daughter was diagnosed with Diabetes Type 1 earlier in the year and it has been a very difficult journey for her too
The major hurdle they are faced with is they look ‘normal’, it is an invisible illness at times. They may be invited to a party and run around enjoying themselves like all the other children, what the rest of us don't see are the repercussions of that fun and the crippling pain they suffer as a consequence of trying to be like the other children.
The money we raise from doing this 10km run may not only help Hayley but we may find ourselves able to help other families faced with EDS. All money raised will be spent on equipment the children will need in the future as you all know wheelchairs (for example) are very expensive especially when money is tight.
Hayley has no idea we are raising money for her but thinks she is giving us all the information we need for a school project.
Thank you for taking the time to read this email.
Lots of Love
Alan and Michelle (Pearson)
Updates
1
- 6 years ago
Michelle Pearson
6 years agoHello! Firstly I am sorry its taken so long to update you. We managed to raise a massive £1,940 which Alan matched! Thank you so much for donating to our cause, we never for one minute thought we would raise such a huge amount of money and are extremely grateful. So we have spent some of the money! The children did not have access to a hydrotherapy pool which is key for pain management so we have bought them one. Their Mum (Hayley) does all their massage therapy in it and it is proving invaluable. Thank you once again Alan & Michelle
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Supporters
34
Kerry
Oct 21, 2017
A great cause - glad to help out. Well done.
£30.00
John and Zoe
Oct 16, 2017
Bit late but well done both of you x
£50.00
Sue and Den Wilmshurst
Oct 11, 2017
You didn't even look out of breath at the end of the race well done to the both of you for running for such a good cause. Sue and Den Wilmshurst
£20.00
Angela Dilloway
Oct 9, 2017
Well done to you both 👏👏 Love Angie, John & Bella x
£30.00
Jean Mead
Oct 8, 2017
Amazing day.You are superstars.Thankyou from the bottom of our hearts.x
£30.00
Tom Scott
Oct 8, 2017
Well done for all your great work for a great cause Michelle and Alan.
£10.00
Kim Jackson
Oct 8, 2017
Well done x
£10.00
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