Brave Claudia is child hero of the year

THIS little girl from Terenure, who suffers from a
highly debilitating and painful disease, has been officially recognised as a
hero.

Claudia Scanlon (7) who suffers from Epidermolysis
Bullosa, or Butterfly Syndrome, was honoured for her extreme bravery at the
annual SMA Nutrition Maternity & Infant Awards which took place on Friday,
November 18 at the Shelbourne Hotel.

Claudia who lives with proud parents mum Liz and
father Gary was awarded with the Child Hero of the Year award at the event,
which recognises Ireland’s most inspiring unsung heroes, as voted by the
public.

Claudia’s outstanding strength in coping with her
extremely painful and dangerous condition was the reason why she was chosen for
the award.

Epidermolysis Bullosa (EB) is a genetic condition that
causes the skin layers and internal body linings to separate and blister at the
slightest touch. It affects about one in every 18,000 children.

Claudia’s mum Liz told of how her little daughter has
quietly strived to overcome the wide range of personal limitations the disease
has imposed on her.

“Every second day since the day she was born she has
had a full dressing change from head to toe,

? said Liz.

“She is 85 per cent
wrapped in bandages from head to toe. Every day new wounds occur.

“She never complains through these dressing changes
and there are days when, as you can imagine, they are stuck and we are pulling
off the bandages and we are taking skin off her body.

“She has to go through a hell of a lot of medication
and she just steps up to the mark. Claudia also has osteoporosis because of a
deficiency in vitamin D and she is extremely under weight.

“Even things like swallowing, going to the toilet and
the eyelids on her eyes, everything affects her. In both her hands her fingers
are contracting. The use of her hands will eventually be gone because her bones
are growing too quickly for the regeneration of skin on her hands. Her toes had
all fused by the time she was one-year-old, so I actually don’t know how she
manages to walk.

“But she adapts to everything. She can hold a pen and
she can use the keys of a computer but she would use it in her way. She
wouldn’t be able to dress herself or she wouldn’t be able to fasten buttons or
tie her laces and she lifts a cup in her own way.

?

Liz explained how Claudia, who currently attends St
Louis National School in Rathmines, defied predictions that she might never
walk or go to a mainstream primary school.

“There is nothing that she ever says that she cannot
do and in her own eyes she is completely normal. She doesn’t want to be treated
differently from anyone else,

? she continued.

“If you said she could do something she would fight
you all the way and there is no ‘no’ with her. She is extremely determined. She
is just determined to be the same as everyone else.

“She didn’t walk until she was three and a half years
of age and at one stage it was suggested that she wouldn’t walk and now she can
walk and she can actually skip. Then it was thought that maybe she wouldn’t be
able to go to mainstream school and she is in mainstream school now.

?

Liz also explained that she recently had a chance
encounter with a man who does some fundraising work for Debra Ireland, which
represents sufferers of Epidermolysis Bullosa, in the restaurant where she works.

She said that the man was inspired by the story of
Claudia’s bravery and with the consent of her mother he eventually decided to
submit a nomination to the SMA Nutrition Maternity & Infant awards in the
child hero of the year award category.

“I am very proud of her. I would give the disease back
but I wouldn’t change her in any way. She is actually the bravest person that I
have ever come across. I am not just saying that because she is my child. I am
absolutely in awe of her, considering all that she has to put up with on a
daily basis. The pain that she goes through on a daily basis she puts most
people to shame,

? Liz concluded.