For those of you, who, like us have never heard of SMA. It is the number 1 genetic killer of babies and young children. SMA is degenerative and terminal although born healthy, babies and young children eventually loose the ability to sit, walk, eat, swallow and even breath, but their mind is never effected, so babies are always bright and sociable. The majority do not survive beyond 18 months to 2 years old. There are several different types of SMA, Type 1 is the most aggressive and fatal form.
Now is our time to make memories, unfortunately the doctors and the hospice are suggesting that any plans we make should be made sooner rather than later. We have always said we'd go to Disney when Fi was old enough, (she already loves Minnie Mouse nearly as much as her mummy) We know Fi might not enjoy Disney as much as mummy and daddy but she will be smiling and she will be happy. We were planning to go in September, giving us time to save and prepare for this special trip but as the doctors have said our time to go is now (July 2016) before Fi Bear is too poorly to go. There are many wish giving charities that exist but the criteria usually states the lower age limit as 2 years.
Please help us to get Fi Bear to EuroDisney. These are the memories we need to make and keep forever...
If you would like to know more you can take a look here: SMA Support UK
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