Mirryn Cunningham has been diagnosed with CLN1 Batten disease and has lost the ability to eat, walk, see properly or stand, requiring 24-hour round-the-clock care.
The Uphall youngster has to be fed through a feeding button in her stomach and has to receive her medication every four hours throughout the day and night.
Up to two children are diagnosed with the infantile Batten disease each year with five to ten believed to be affected in the UK.
Mum Vicky, 34, says “tomorrow is a miracle for Mirryn” with doctors unable to give an indication of how long she has left to live.
She said: “Shockingly, the disease has basically eaten away half of her brain. From 2017 to 2019, MRI scans show a massive loss in brain tissue, noticeable to the untrained eye. Her brain is nearly half the size it used to be. We have no idea how much longer we have with her and as a mum that is so difficult to live with. We have to enjoy every moment with her while we can.”
Babies born with the condition often develop normally for the first few months of their life but towards the end of the first year, developmental progress starts to slow down. The symptoms of Batten disease are caused by the build-up of fatty substances called lipopigments in the body’s tissues.
Mirryn was diagnosed with delayed myelination in 2017, but Vicky pushed for a second MRI scan in January which revealed the severity of her brain’s deterioration.
“You know as a mum when your child can’t hold their head up and doesn’t reach out to touch things instinctively that there is more to it,” said the single mum of two.
“All I remember about the day of her diagnosis was the shocking numbness that seemed to freeze that horrific moment and every racing emotion as I fell to my knees in disbelief and horror.
“I would advise any parents out there to trust their intuition. Although sadly, there is no cure for this condition at least I now know exactly what I’m dealing with and Mirryn can access the right care.”
Mirryn is unable to support herself and the family has launched a gofundme page to raise funds for a special seat costing £2,500 to protect her posture.
Vicky says she has been touched by the generous donations so far with more than £1,500 already raised to go towards the P Pod.
She added: “I am so grateful for any care support I receive, just so I can occasionally have a good night’s sleep and this chair would make a real difference to both our lives.”
To donate and for more information on the fundraiser, click here.