Appeal to help raise funds for 3-year-old Nova who is suffering from rare illness

Three-year old Nova Leigh Breeze from Drumkeerin who at 16 months old was diagnosed with mucupolysaccharidosis mps1 otherwise known as Hurlers Syndrome.

This is a rare disease in which the body is missing or does not have enough of an enzyme needed to break down long chains of sugar molecules.

Nova Leigh started her treatment for this on Monday March 13; she is having enzyme replacement therapy in Temple Street hospital in Dublin, while her family is awaiting contact from Manchester where she will go to have a bone marrow transplant.
This is the stark reality facing her parents Kerey Breeze and Lisa Cawley who have four children in total.

In a bid to get the treatment she so vitally needs and to relieve the financial burdens her family are facing a gofundme page has been set up.

Charmaine Gethins who is organising this fundraiser states “I have decided to set up this fundraiser for very close friends of mine. They are a family of six, including themselves. They have a teenage girl who is 13, a 10 year old boy and two2babies under 3 years of age.

“Nova who has just turned 3 at the end of January this year has complex needs and is immobile and at only 16 months old she was diagnosed with Hydrocephalus, which is a build up of fluid on the brain, this in turn causes harmful pressure on the brains tissues.

“This was the beginning of Nova's complications, since then she has had many different conditions and problems arise.
“Nova was diagnosed with Hurler's syndrome at the beginning of this year (2023) which we now know was the cause of all her other problems.

“In such a short space of time our wee pet has undergone brain surgery and has had a VP shunt inserted, which has the Hydrocephalus under control, she has had two Hernias, one which has been repaired, she has had gromits put in and her Adenoids removed, she has severe hearing loss and has clouding on her cornea's, she has obstructive sleep apnoea, and has had problems with her gallbladder.

“Nova has scoliosis which means she is completely immobile, she can not stand on her own only with the use of a gait trainer. She will need a wheelchair in the future.

“Nova is about to start treatment for the Hurlers syndrome, she will receive enzyme replacement therapy and within a few weeks she will receive a bone marrow transplant.

“Nova will have to undergo chemotherapy before receiving the bone marrow and this treatment is only available to them in Manchester, where they will be for six months possibly more depending on her treatment, this will be very hard for them being away from life at home and there other children.

“Nova's father will be over and back weekly once treatment commences while her mother and her 9 month old sister stay in Manchester to be close to her.

“As you can all imagine bills in the rented accommodation and bills at home will mount up very fast.

“The two older children have to remain at home for school, as life has to remain somewhat normal for them through this tough time, come the summer holidays the kids will be going to stay in Manchester with the rest of the family.

“The HSE obviously cover some medical costs but not things such as a specialised car seat which is urgently required as she is currently in a normal car seat which is super uncomfortable and she cries when she is in it from the pain, one of these can cost up to€ 3.000.

“There will obviously be more things that they need for Nova as she grows older and as her treatment continues.
“The flights to and from Manchester every week and the fuel for the car will cost them a lot over time and I am sure there will be plenty of other expenses that I myself can not think of for them right now.

“It's very hard watching them go through this, they are super stressed and worried about how the treatment will go and being away from the support of their family and friends.

“I ask all my own friends and family to reach out and please donate to help and support them in any way with there expenses and to help them on there journey with the treatment of little Nova.

“Nova is a star, one in a million she shines so bright and remains smiling and laughing despite everything she has gone through, and still going through, nothing brings her down she is such an affectionate child and shows love to everyone close to her.

“She is one of the strongest and bravest little girls I have ever met, and I am sending her all the love and support on her journey to getting better.

“We love you Nova Leigh Breeze xx.”
To donate to this cause log onto https://gofund.me/3f946f7c