Light up for Isabelle
We are now preparing for Augusts great cause for the SO45 Lottery which will help local toddler Isabelle Cooper with plans for a sensory garden and bedroom. Born in Hythe in April 2013 Isabelle is only 2 years old and suffers from a severe eye disorder called Leber Congenital Amaurosos. LCA is an eye disorder that primarily affects the retina, which is the specialized tissue at the back of the eye that detects light and colour. People with this disorder typically have severe visual impairment like Isabelle beginning in infancy. There are various forms of LCA depending on genes that cause it however Isablle’s type is rarer than most due the fact she inherited a rare rogue gene from both parents.
Leber congenital amaurosis occurs usually in 2 to 3 per 100,000 newborns. It is one of the most common causes of blindness in children however Isabelles type is rarer still and with no research behind it to date, there is no cure.
Isabelle’s needs was repeatedly requested as one of our causes and so naturally we then contacted parents Martin Cooper, and wife Milena Cooper to ask if we could help with our August Lottery.
Isabelle was first taken to the doctors at 7 weeks old after it was noticed that her eyes continued to roll to the back and flicker. She was then referred to Southampton General Hospital where Martin and Milena were told that they suspected a brain tumour – however further tests including a MRI Scan showed that Isabelle in fact has LCA.
Martin & Milena have been told by specialists that although it is unlikely that her sight will improve, the extent of Isabelle’s blindness will not be fully known until she reaches around 7 years old. Looking to the future it is thought that Isabelle will need the assistance of a guide dog.
Despite Isabelle’s disability, she is a beautiful, fun and happy two year old girl who loves to listen to music including that from Ed Sheeren, sing along to nursery rhymes and eat chocolate buttons. She is inquisitive and does not let her sight hold her back. Milena speaking of her daughter says “ Isabelle is a complete chatterbox, she does not stop talking or singing. Her hearing is impeccable, she hears everything and can hear a pin drop”
Fundraising has already been taking place with an impressive £6k raised by Zoe O’Hara & Louise Gough of The White Horse in Marchwood. This was raised with the help of family, friends and the community when they not only braved a bungee jump but then had both their heads shaved off in order to raise further funds. This all took place in June with money still coming on to their fund raising page www.gofundme.com/lightupisabelle
Martin has also been approached in recent weeks by the Army who are keen to organize a charity event that can incorporate assisting with the setup of the sensory Garden.
Isabelle as do most two year old toddlers loves to play in the garden however due to her sight finds this difficult with how the garden is currently. In order to make safe the garden needs to be completely leveled out with the lawn being replaced with asro turf. Sensory items such as Tactile pads will then help Isabelle with different textures, sounds and colours than she is limited in seeing. Various textures are currently something she finds difficult and does not like at the moment so simple things like this could really enhance her life. The same will go for her bedroom where similar sensory items really could make a difference to this already bright little girl.
We all take for granted what we have as we go about our day to day lives and although we cannot give Isabelle the gift of Sight we can give her the gift of sound, light and touch and her parent the peace of mind that she is able to be safe in her own environment.
As we ask each month for your help, remember looking after those in your own community is reward in its self however you could also be the winner of a CASH prize usually around £1,000. Each ticket only costs £2 with 50% as the cash prize and 50% to our local cause, charity or project that comes from your own community in SO45. You can purchase a ticket from various outlets in the area or can set up a standing order by emailing firstname.lastname@example.org