Ophelia - A Little Girls Dream

Our beautiful daughter Ophelia Rose Sparkes (Fi Bear) was born 24th January 2016 at St.Peters Hopsital Chertsey.  As she grew and developed we noticed she began to miss developmental milestones such as lifting her head and rolling over.  Two weeks ago after a routine trip to the GP Ophelia was taken to A&E and was later diagnosed with the devastating terminal genetic disease Spinal Muscular Atrophy Type 1. (SMA) How could we, a Mum only 18 and a dad just 21 accept and come to terms with this devastating diagnosis...

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

Donations

  • Sarah Jenner 
    • £10 
    • 46 mos
  • Suzanna Knowles 
    • £10 
    • 47 mos
  • N Johnson 
    • £10 
    • 47 mos
  • Roisin Crowley 
    • £10 
    • 47 mos
  • Jackie Witney 
    • £20 
    • 47 mos
See all

Organizer

Sue Sparkes 
Organizer
Woking, South East England, United Kingdom
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