Incurable disease but mum hails
Adam as a little fighter
 By Elaine
Sheridan
Toddler Adam O’Shaughnessy can’t go out to play.
The three-year-old sits and watches other children having fun knowing
he’ll never be able to join them.
For the Limerick toddler — who is a mad Liverpool fan —suffers
from an extremely rare, incurable condition that turns his muscles to
bone. Adam has to be careful not to hurt himself so any activities he
might engage in have to be limited.
The rare condition is known as Fibrodysplasia Ossificans Progressive (FOP)
and it affects just one out of every 2million people worldwide.
A random genetic alteration causes the body’s muscles and tendons
to stiffen and turn to bone — and just any little knock, injury
or pressure can worsen the condition.
His mum Antoinette did lots of research on the condition and admits that
the more she learned about it the more horrified she became.
She said: “Watching FOP take hold of our little fighter breaks my
heart. As time goes by Adam grows less agile. His joints ache and he wakes
in the night screaming in agony. He struggles to walk and, because of
his misshapen thumbs, he can’t pick up toys or crayons.”
Adam is only one of three children in Ireland with the disease —
the other two being twins from Northern Ireland who are aged 12 now.
Sadly at the moment there is no cure for FOP although drugs can slow it
down and ease the pain.
But last year Antoinette and Adam travelled to Philadelphia where Dr Frederick
Kaplan — an expert on the condition at Pennsylvania Hospital —
told them they had just found the gene that causes the problem.
The news means that while there won’t be any immediate cure for
the disease it will at least allow them to get working on one.
While they were in America Antoinette met a 19-year-old man who suffers
from FOP and he has given her a huge sense of hope for Adam’s future.
The 33-year-old mother of three said: “Going to see the professor
in America was great. It was a relief to hear that they now know the gene
that causes FOP so therefore they can get to work on a cure for it. It
may be a long way off yet but at least there’s a light at the end
of the tunnel.”
But in the meantime Adam has to rely on medication to ease his pain. Water
therapy can help to soften the bone and the family are trying to raise
funds so they can buy a hydrotherapy pool.
Antoinette said: “Luckily, people from our hometown have rallied
round organising fundraising events to help raise cash. Their generosity
has meant so much to all of us.”
Adam is Antoinette and Bernard’s youngest son. He has two brothers
— Aaron aged 12, Nathan aged six and a sister Jessica aged 13.
The family don’t know what is in store for Adam and take each day
as it comes. Adam gradually won’t be able to walk and faces a future
in a wheelchair. The oldest person to live with FOP was just 52 and Adam
may not live beyond this age.
Antoinette said: “I can’t help thinking what lies ahead for
him. Adam might be slowly turning to stone, but he’s got the biggest
heart I have ever seen.”
There are many expenses ahead and donations can be made to the Adam
O’Shaughnessy Appeal through AIB, 103 O’Connell Street in
Co. Limerick, account number: 21206180, sort code: 93-52-47. |
