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Ipswich boy faces being wheelchair-bound by the age of 12 due to rare illness

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Tuesday, July 23, 2019

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Most young children wouldn't give the ability to run around freely a moment's thought.

But one Ipswich couple have faced every parent's nightmare after discovering their youngest son has a rare disorder which means he will eventually be wheelchair-bound.

Blood tests towards the end of last year revealed that Oakley Turnbull, now aged three, had the rare Duchenne Muscular Dystrophy (DMD).

The rare genetic disorder cause muscles, starting with the arms and legs, to gradually degenerate and weaken.

It means that Oakley could be wheelchair-bound by the time he is 12, as well as face heart and lung problems later in life.

However his parents Sam Turnbull, 34, and Scott Turnbull, 35, are now raising awareness of their son's life-limiting condition with the help of their "incredibly supportive" nursery school teacher.

Coping with the diagnosis

Since Oakley's diagnosis, Mr Turnbull admits the couple have had to come up with their own "coping mechanisms" to deal with the shock and make sure that Oakley and his four older siblings have a life this is happy and full of fun.

Mr Turnbull, who works for Associated British Ports at Ipswich docks, said: "I had two months off work, they were very understanding and supportive. I just researched everything and anything and I'm still doing it."

Mrs Turnbull said: "I know what's going to happen and I can't change what's going to happen so I try to just enjoy what we've got now and the fact Oakley is still able to get around a be a normal boy."

Raising awareness of Duchenne Muscular Dystrophy

After the DMD diagnosis, one of the hardest people for the family to break the news to was Oakley's nursery teacher, Lisa Mattin-Moss, who looks after the three-year-old at the Button and Bows nursery in Aster Road, Ipswich.

After feeling "hopeless" and "not knowing what to do" the nursery teacher, who has been Oakley's key worker for the last 18 months, has arranged a fun day which will raise awareness of DMD and also raise money for the charity Action Duchenne.

She said: "Oakley is an amazing little boy, the family have been so strong. This fun day is to make a memory for them.

"Everything for him is a massive achievement and a makes a memory for the family. We just want to make it super happy and memorable. It's going to be a giggle.

"We want to raise awareness for Action Duchenne as they have given Oakley's family so much support - they fundraise to trial treatments that may one day help Oakely's family or other families in the same position."

Oakley's Fun Day

Ms Mattin-Moss added: "Oakley is all about fun and mess and being happy, the fun day is going to packed full of all the things he will enjoy."

Families are being asked to dress up as superheroes for the main event, which will be a sponsored mud fun run and obstacle course.

There will also be leaflets, posters and t-shirts available that will explain the work that Action Duchenne does for families dealing with a DMD diagnosis.

Oakley's fun day will take place on Saturday, August 10, between 10am and 1pm at Buttons and Bows in Aster Road.

Source: Ipswich Star
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