Mum Jill Nightingale recently released balloons to mark four years since her daughter was diagnosed with a rare genetic condition.
She tells AASMA DAY about the cruel condition and why she lives in hope that a cure is just around the corner.
Seeing her daughter Aimee Lloyd is upset about something but not being able to communicate with her to find out what is wrong is one of the most difficult aspects of Rett Syndrome for Jill Nightingale.
Jill, 38, who lives in Ashton, Preston, and also has a son, Daniel, explains: “It is so hard for us as parents to see Aimee upset, as she can’t talk and tell us what the matter is.
“It is like a guessing game and we have to go through every possible thing we can think of that might be bothering her until we find what it is.”
Aimee, five, has the rare genetic condition Rett Sydrome which usually only affects girls.
But until Aimee reached the age of two, her family thought she was just a normal, happy and healthy little girl.
Jill, who runs The Butty Shop on Eldon Street, Preston, recalls: “Aimee was perfectly normal and happy as a baby.
“But at the age of nine months, we noticed her development had started reversing.
“She had been rolling, but suddenly she could not do this any more.
“She wasn’t able to sit up unaided and she wouldn’t look us in the eye, she had lost the ability to make eye contact.
“Aimee also used to wring her hands constantly. We weren’t aware at the time, but we later found out this is one of the symptoms of Rett Syndrome.”
After months of undergoing tests, Aimee’s parents were given the devastating diagnosis just before her second birthday.
Rett Syndrome is a severe disorder which affects the brain and causes disabilities. Aimee’s parents know their daughter may never be able to sit up herself, walk, talk, or use her hands.
Since Aimee’s diagnosis, Jill has done a lot of work to raise awareness and funds to support the work of Reverse Rett, formerly Rett Syndrome Research Trust UK.
Families of sufferers have been given hope after scientists managed to reverse Rett Syndrome in mice, meaning a full cure in humans may be possible. Research is going on worldwide.
Jill says: “Nobody has really heard of Rett Syndrome, so I am trying my best to raise awareness about it.
“The more people we can get fundraising for the Rett charity, the quicker we can find a cure to help Aimee and other girls like her.
“At the moment, Aimee is pretty stagnant and is happy and healthy.
“She was hospitalised with a chest infection which turned into pneumonia over a year ago, but since then she has been doing really well.”
Aimee is a pupil at Acorns School at Moor Park in Preston and likes anything musical and using her hands to explore different textures.
Jill says: “Aimee reacts differently with her eyes when you ask her something and she does seem to understand what you are saying to her, even though she can’t respond.
“It is all about routine and picking up on body language, mainly her eyes and expressions.
“There is a lot of money being spent on research into finding a cure for Rett Syndrome and we are just waiting for that breakthrough. We just want it to come in time for Aimee and other girls who are living with this condition.”
To mark four years since Aimee’s diagnosis, Jill held a balloon release at Baffitos at The Waterfront in Preston to signify hope for Aimee’s future as well as raising money for research into Rett Syndrome.