£5,821.00raised of £15,000.00 goal goal
Lexi was born on 18/7/12, and by the age of 4 months had started having seizures. At first these were thought to be Febrile, or fever, seizures, but by the turn of the new year in 2013 it was clear that Lexi had a severe epilepsy condition. On March 6th 2013, Lexi was admitted to the University Hospital of Wales, Childrens Hospital, straight into intensive care, having had seizures every 5 minutes over a 3 hour period. The next 11 weeks of Lexi's life were spent at this hospital during which, Lexi was having up to 100 plus seizures on a daily basis. Thanks to the fantastic help of the staff and consultants at this Childrens Hospital, Lexi's seizures were gradually brought under relative control. I am convinced that the treatment and care given to Lexi at this time undoubtedly saved her life. After her 11 weeks at the unit, Lexi was discharged with a diagnosis of Migrating Partial Epilepsy of Infancy, a very rare and very severe form of epilepsy, and hugely life debilitating. This diagnosis meant that Lexi was susceptible to seizures at any given moment and could often have a multitidue of seizures in any one day.
Migrating Partial Epilepsy of infancy is sadly a life limiting illness ( average is 5 years), and hugely life debilitating, meaning Lexi will never walk, talk, or eat of her own accord,and requires 24 / 7 care for the remainder of her life. Lexi will now has her own Wheelchair adaptive vehicle.. Lexi will remain on a cocktail of medications that help prevent the seizures, although cannot stop them in their entirety. Our own consultants for Lexi cannot give any insight into Lexi's future development .
THE FUNDRAISING REASONS
The aim of my fundraising is quite simple. We have recently completed the adaptions to the house, so massive thanks to all that have donated towards this. Now we are now aiming to continue to raise funds for further home improvements beyond the essential required, and to replace the ageing adapted vehicle we have. The adaptions to date have provided the major works and support infrastructure.......raised paths, external lift for access, internal hoists, specialist bed etc. Now the aim is to improve the external of the house, and garden , to make access all round easier for Lexi. The current vehicle that has Lexi's lift now needs replacing. We have had a quote of £4-5,000 to remove the lift from the existing and place into the new .
We plan to carry out many fundraising events this year. A walk along Hadrian Wall, a trek up the Welsh 3 Peaks, and indeed Lexi's Dad, despite missing ligaments in his knee, is running the Newport 10k this May too
A BIG THANK YOU
On behalf of Lexi I would like to thank you for any donation you make towards helping ease the changes we have to undertake to look after her. She is a very much loved little girl who has a loving family around her. We aim to give her the best we possibly can to make her life a little better than it has been.
FOLLOW LEXI'S LEGIONS
You can follow LExi on Facebook by clicking here
- anthony colcombe
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