Help Cerys get the heart procedure she needs

Cerys is my gorgeous 12 year old daughter who up until last summer was a vivacious healthy girl who loved playing football 4-5 times a week at a relatively high standard.  Life  took a turn for the worse in July as she started suffering with stroke like migraines called hemiplegic migraines.  These are a very rare type of migraine and the severest.  These  cause her to have paralysis, a loss of sensation and motor weakness in the left side of her body for up to 24 hours.  She is completely unable to function and has loss of speech, word finding difficulty and weakness .  They present similarly as if someone was having a mini stroke and she has suffered  over 30 episodes since the summer.

Paediatricians and cardiologists have discovered that Cerys has a hole in the heart called a pfo which could likely be the cause of her symptoms and left untreated could increase the risk of her having a stroke in the future.   She has had to stop playing football at the level she was playing at in order to manage her condition and is currently taking beta blockers and anti convulsant medication to keep the episodes at bay but they are relentless and she is still having multiple hospital admissions.  

Her  paediatrician and cardiologist want the hole in her heart repaired to improve her quality of life, but unfortunately, the NHS surgeons will not repair it as she has not had a mini or full blown stroke yet!!(N.IC.E guidelines do not allow repair for hemiplegic episodes).  

We have made contact with two cardiac surgeons in Bristol who would like to help Cerys receive the treatment that she needs.  However, private insurance through my husbands work is unlikely to fund it and the cost of the procedure is around £20k.   

Anyone who knows Cerys, knows that she would help anyone in dire need but she is the one who needs help to get this procedure so that she can function and be able to live the life that she deserves.  

Any help would be gratefully received to help us fund the procedure.  In the event that the procedure does not go ahead or is funded  (which we have been told is terrifically unlikely), then donations will be refunded or if individuals prefer, they would be donated to a Cardiology charity to make sure that other children/adults with this condition do not have to suffer.

If we get the approval for the procedure, then it will all proceed very quickly hence why we thought it best to start fundraising now

A million thank you's for your time xx


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Kirsty Edgson 
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