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Alex Wells
Leigh Disease
5/2/10 - 12/9/10
Alex was the most beautiful baby with big blue eyes
and lovely skin colour. At first he was so content it was nice to have “a
quieter baby”, we did everything as a family including a holiday, swimming
and cinema. Very soon he started sucking milk hit and miss, taking three
out of four hours to give him milk any which way I could. The advice from
Health visitors was he looks healthy and his weight is ok, he has colic:
change his formula and bottles. The crying and constant feeding drove us
mad, causing me to ask my GP which in turn prompted my Health visitor to
admit him into hospital. I went in totally unprepared, thinking change of
formula/bottles maybe some medicine; back home in a couple of hours. We
came home one month later having been told Alex had Leigh’s Disease, a life
limiting, severely disabling genetic condition and would probably die in
about three months…not only that but his Sister, Father and Myself may also
have it, “THE BOMB HAD DROPPED.” No one can understand the heartache and
feelings you have of disbelief, desperation, guilt, failure and living in a
constant state of tiredness and crying.
Alex touched every ones hearts. He loved people,
none more than his Mummy, Daddy and Big Sister, whom at just two years old
used to help feed him through his NG tube. He lost the ability to smile,
suck or make any noises which was heartbreaking but we still had fun and
cuddles.
There are many reasons for setting up the Galaxy
Fund but two main reasons are to help with medical research to cure and test
for these metabolic diseases and to raise awareness, not just amongst every
day people but amongst Doctors and Health visitors.
The fund is to celebrate Alex’s life. It is not
just special to our family but to special friends who helped set it up and
support it. They treated Alex as their own and feel our pain.
Mummy, Daddy and Big Sister Catherine love you very
much and want you back every day. You touched our hearts and taught us so
much; we know you watch over us.
God Bless
you Baba XXX
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