We
have been so lucky that we had Lottie for as long as we did. SMA Type 1 is a
cruel genetic condition, of which you learn about just as you are starting
to enjoy parenting and looking forward to your new role in life. A
diagnosis at 4 months old gave Lottie months not years to live. It's amazing so
many of us (1 in 40) carry the defective gene yet it's relatively unknown.
There is currently no cure; however ongoing clinical trials and medical
advances coming to market in the next few years could remove the death sentence
from this condition and possibly in the future give a complete cure. This is
why our first charity is the SMA Trust. They drive the research and help shape
the political agenda pushing towards minimising the impact of SMA for future
generations. Our second charity is Spinal Muscular Atrophy Support. They are
there for the families and children when your world’s been blown apart by
diagnosis. They sent us a beautiful chest covered with owls filled with sensory
toys which proved a true delight. The toys were well used and the box will
always be Lottie’s. We want other families to also receive this support and to
enjoy the great sensory toys just as we did. SMA Support also works with the
SMA trust to drive forward research. Our third charity is the East Anglia
Children’s Hospice. After Lottie stopped breathing three times in March 2016 we
didn’t expect to leave A&E or intensive care. The hospice at Milton was to
be a peaceful ending place. The care, use of facilities and relaxed atmosphere
helped the dust settle and dare us to think about making it home. Our
little girl was so darn tough we would never have guessed she would
soldier on for a further 10 months. EACH also visited Lottie at home. If
friends and family were a charity they would be listed too. Proud is the word we
keep coming back to. Eternally proud of Lottie for her determination to keep
going whilst skimming death on a weekly basis, proud that we gave every last
ounce of effort for her and proud to have known her, for knowing her has
made us all better people.
We
would like to share donations equally between these three charities.

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