News

Matthew's in the swim

By Rebecca Connop Price
May 08, 2009

A boy with a rare disease is doing a sponsored swim to raise money for a younger child stricken with the same condition.

Matthew McAllister, aged 10, from Fleet, was diagnosed with Ehlers-Danlos syndrome Type 3 (EDS) at the age of 13 months.

EDS is a hereditary condition affecting the ligaments, which lack the normal collagen – the material that gives them their strength.

Sufferers bruise easily, can dislocate bones easily, tire easily and might suddenly lose the ability to support their weight.

There is currently a debate in the medical community about whether EDS is the same as Hypermobility Syndrome, which has much of the same symptoms.

Since last autumn, Matthew has been using an electric wheelchair which he was given, thanks to the Chobham based charity Children with Special Needs Foundation, but he is capable of walking around on his own for short periods of time.

Matthew is now hoping to raise £4,000 for a younger child, Olivia Court from Nuneaton, who has also been diagnosed with EDS.

His mum Stephanie, who also suffers from EDS, met Olivia’s mum Lena Court through a support group based in Fleet.

Stephanie said Matthew, who sometimes uses a manual wheelchair and sometimes uses his electric one, has been very firm about wanting to do the 1,000m swim to help Olivia.

“He wanted to be an example, to help her out and he wanted to do it on his own,” she added.

“Some people his age would be able to do 1,000m no problem, but for Matthew it will be really tough. He will need to practice to build up his stamina.”

Olivia, who is two, has spent much of her life in and out of hospital.

From a very young age she has had to wear plasters from her hips to her feet, and has had operations on her hips.

She was in Great Ormond Street Hospital for a two-week intensive physiotherapy pro-gramme from the end of March until earlier this month, and has only just started to walk again.

Stephanie said: “We are trying to raise £4,000 for her to get the same powered wheel-chair Matthew has, because she also fatigues and gets pain like Matthew when trying to walk and wheeling a manual chair.”

Olivia’s mum Lena was recently diagnosed with Scheuermann’s disease – ab-normal curvature of the spine.

Scheuermann’s disease is a progressive form of Scoliosis, an abnormal curvature of the spine and instability of the spine, and will ultimately lead to spinal surgery.

Lena also suffers from Chronic Fatigue Syndrome and requires genetic testing to confirm whether she has EDS Type 7, the form of EDS Olivia has.

Stephanie said: “She has been really struggling with pain and loose joints. To us, this has made our quest to get Olivia her powerchair even more urgent and important.

“Lena has to physically pick up and carry Olivia whenever she chooses to go in to another room at home or to a different part of the garden, as Olivia’s stamina is still very short. Obviously a lot of that has to do with Olivia’s age mixed with the EDS.

“I want people to under-stand just what a huge feat and commitment this is from Matthew.”

For more information on EDS visit www.ehlers-danlos.org or www.hypermobility.org

Anyone who would like to help Matthew raise the money for Olivia’s wheelchair can contact Stephanie through her website by visiting www.teamcoloursuk.org.uk.

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