The following are links that we first came across when we found out that our darling daughter, Chloe, had Krabbe's. We were so inspired and felt so loved and supported by these amazing people whom
we have had the opportunity of communicating with through the great technology of today
(yeah Internet!!!). Just think how lonely it must have been for families before there
was the internet. From the bottom of our hearts we thank these wonderful
new friends who have shared their beautiful children with us.
Hunter's Hope
is a wonderful foundation which was formed by former Buffalo Bills Quarterback,
Jim Kelly and his wife, Jill in honour of their son, Hunter,
who has Krabbe's. The foundation
raises funds to support research efforts to find a cure for
this devastating disease. Every year
Hunter's Hope hosts a family & medical symposium in early July.
We were blessed
with being able to take Chloe to the Symposium this year and it was
an
experience beyond words. Amazing, Inspirational & LOVING.
The Krabbe's Family Network
is an amazing forum for families to communicate, ask questions,
and support one another through the trials & tribulations
of living with Krabbe's.
The wonderful families of this network are so loving, inspirational,
and provide first-hand knowledge of this disease.
The Krabbe's Kids site
is dedicated to the beautiful children who are struggling and have
struggled with this cruel disease. You will find precious
pictures of each amazing miracle
and links to their heart-breaking stories. Take a
look around, read the stories,
share in the love, and you will never be the same. Each
precious child
is truly a heaven-sent gift from the twinkling stars above.
It will break your heart and bring love and warmth
to your heart. Share the love of our sweet babies.
If you remember the 1992
movie "Lorenzo's Oil" starring Susan Sarandon and Nick Nolte,
then you will have seen a dramatization of a real life story about a beautiful
boy,
Lorenzo Odone, son of Augusto and the late Michaela Odone.
Lorenzo suffers from a form of leukodystrophy,
"Adrenoleukodystrophy (ALD)". The Myelin Project was founded
by Augusto and Michaela in their pusuit to accelerate medical research on
myelin repair.
Bethany's Hope Foundation
is a Canadian foundation committed
to conduct research into the cause, control and cure" of another form
of leukodystrophy
called Metachromatic Leukodystrophy (Chloe had Krabbe Leukodystrophy)...
Bethany was a beautiful little girl who passed away from Metachromatic
Leukodystrophy
and her mom and dad, Dave & Lindey McIntyre continue "to give 'Hope'
to children with the disease and their families".