THE mum of a boy who could be one of only two people in the world with a rare condition is backing a volunteer scheme helping families of sick children.
The Middleton family finally have a name for their son’s extremely rare condition, but now live day to day not knowing how it will affect him as he grows.
They have been supported by the Helen and Douglas House volunteer scheme, where people offer to help up to three hours a week at the hospice in Magdalen Road, East Oxford.
Michaela Middleton and her family, husband Justin, 43, son Finley, five and daughter Lucie, two, took part in the pilot scheme and the help has been invaluable.
She said: “They are like little angels. Some days you get overwhelmed with the kids and things.
“They will do anything you need around the house or if you need help with shopping.”
For almost five years, Finley Middleton went through a string of tests. His doctors also sought help from specialists in France and the USA to find out why he wasn’t growing.
Last October, he was diagnosed with GINS1 which is so rare there may only be one other person in the world with a similar diagnosis.
It means the future is unknown because doctors don’t know how the condition will progress and how it will affect the youngster as he gets older.
It is further complicated as Finley is immune deficient, which means his immune system does not work properly and he’s prone to infections which can leave him in hospital.
Finley was born weighing just 3lb 13.5oz and spent the first year of his life in hospital.
Now aged five the youngster weighs 7.2 kilos, stands 80cm tall and wears clothes for a child aged nine months.
Mrs Middleton, 45, of Arncott, near Bicester, said: “Because he’s so unique they don’t know what to expect, so we are on a treadmill we don’t know how to get off.
“We are still struggling because we don’t know what time will bring. It could be life-limiting. Potentially he could pick up an infection he can’t fight even with intervention – we don’t know.”
Finley takes daily medication, has a weekly infusion of antibodies to build up his immune system and his diet is supplemented with high calorie feeds through a tube in his stomach. He also needs a feed during the night.
The good news is that the Five Acres School pupil is growing taller, last year by 5cm.
Mrs Middleton, a call handler for South Central Ambulance, said: “He’s a lovely little boy. It does make me think he’s come a massive distance since all that.
“He is incredibly dynamic. When he wakes up he starts and doesn’t stop all day.”
- Anyone interested in volunteering should see helenanddouglas.org.uk, or for an informal chat call the volunteer office on 01865 794749.