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Help Edie to delay multiple spinal surgeries
£470 raised
18% of £2.7k goal
22 contributors
0 days left
Ended Jun 3, 2014
My daughter Edie is 30months old and has so far endured open heart surgery and being tube fed for 2 years she is a ray of sunshine and is always smiling. She has a rare genetic condition and as a result has developmental delay, congenital heart ...

My daughter Edie is 30months old and has so far endured open heart surgery of which there will be more to come and being tube fed for 2 years as well as many other struggles, but despite everything she is a ray of sunshine and is always such a joyful smiling little girl whom touches the heart of everyone she meets. She was born with a rare genetic condition and as a result has developmental delay, congenital heart disease, low muscle tone, hypermobile joints, sensory processing difficulties and significant scoliosis/curvature of her spine and keloid scar difficulties which is when you produce to much scar tissue. This can result in very painful non malignant tumours. She also suffers from reflux. She is a very motivated little girl and has achieved sitting independently at the age if 2 and is now eating and drinking. Unfortunately Edie's spine curvature is already graded as significant so she will need corrective surgery but this cannot be done until she is in her mid to late teens which will be around the same time as her next open heart surgery. However it is highly likely that her curvature is going to progress quickly because of her young age which means growth rod surgery every 6 months until her final operation in her teens.Multiple surgeries are very risky for her due to her heart condition and keloid scar tendencies. To try and delay growth rod surgeries for  as many years as possible she needs postural support. The NHS will only offer a solid brace in which she cannot achieve any physical progress and becomes very withdrawn which is heartbreaking to see. Everything she has achieved is taken away from her so I have researched an alternative called the Second Skin splinted suit which is knicknamed The Life Changing Suit or Superhero Suit. Its just what she needs for postural support and quality of life and this is what we are fundraising for together with a special seat adaption called the Goto Seat by Firefly so she can join in more family activities with her 2 siblings. The Goto Seat means she can sit in a swing in the park or a shopping trolley or up to the table in a cafe or restaurant or at a table at a childrens party, in fact the possibilities are endless.Thankyou for taking the time to read her story and any donations of any size would mean the world.

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