We have decided to try and raise some money for ACT as our little girl is being treated at Addenbrookes for a condition that only affects 3 in 100,000 babies!

 

It is called Caudal regression syndrome/sacral agenesis, her sacrum at the bottom of her spine is missing, it a congenital condition, 

 

she suffers terribly with bowel and bladder problems, she will in time have a stoma.

 

she has to be catheterised every 3hrs to empty her bladder, not nice but we have to protect her kidneys.

 

Kaylin will have this condition for life, there is no cure they can only treat the problems involved in it.

 

Kaylin has to go through numerous tests and when we go to the hospital the paediatrics department are just amazing, we spend lots of time on F2 which is the day unit, and also have massive support from the neurosurgical dept, the gastro dept and the urology dept, we have specialist nurses for the catheter side of things, they are all wonderful and deserve a medal!  

Kaylin now has a gastrostomy tube in her tummy now , we are now able to put all her medication directly into the tube and extra fluids etc.

 

We are going to hold a quiz night and a raffle in January and I am hoping to persuade my husband to do a parachute jump too!!!

 

I have some wonderful friends who are doing a fun run in aid of ACT too.

 

Thanks for taking the time to visit my JustGiving page.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.

So please dig deep and donate now.

Thanks so much for taking the time to look at our page x

we have also just had another 2 donations

 Trish Cooney £30

and

Vivienne Wilsdon £20 both colleagues of Kaylins' Nanny Linda! 

we have also raised £172 through collection boxes in various places,

making our total  £424 now.