A MALLOW family is attempting to raise €100,000 to pay for life-changing surgery for their daughter, Anna.
Anna Browne is a seven-year-old girl recently diagnosed with spastic diplegic cerebral palsy.
This condition affects body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance.
Anna’s mother Evelyn said Anna could have been diagnosed as a baby, but she was not given an MRI scan until last June.
“The health nurse came out to see Anna when she was just a few months old and noticed that Anna was a very floppy baby and had hypermobility. Anna’s sister Emma, who was three and a half at the time, had very similar symptoms as a baby.”
Anna has three siblings, Sean, 15, James, 13, Emma, 10.
“You can have hypermobility for two reasons,” Evelyn explained.
“More than likely you can have hypermobility because you have a hidden syndrome, or else you can have it for no underlying cause.”
Evelyn said that while Emma was tested for hidden syndromes, Anna was not.
“It was automatically assumed that she was in the same category as her sister.”
Evelyn said over the years, Anna was referred to a paediatrician, a neurologist and an orthopaedic specialist, but unfortunately, she was never diagnosed.
“In Anna’s case, she had the hypermobility because she has cerebral palsy, but no one scanned her. What annoys me is her sister had this scan when she was about 11 months old.”
After a number of years, Evelyn said she had to do something to help her daughter.
“Anna wears splints 10 hours a day and casts 10 hours a night. She is in pain constantly. It takes at least 30-40 minutes in the morning to get her up and we struggle at night to get her to relax. Sometimes she wakes in pain, it is hard to watch.
“By Christmas 2015-January 2016, things were really bad. When you put her shoes on her feet it looked like they were on the wrong feet because they were turned out so badly.
“She was walking less and less, so eventually we were once again referred back to Enable Ireland and eventually after a long fight with TDs, we were seen on May 30 last year and after examination, they said Anna had lost 30%-40% of her muscle mass on the right side of her body,” she said.
Muscle mass can be lost for two reasons, either because you are not using it or because of an underlying neurological disorder and Anna needed an MRI to rule out a neurological disorder.
Anna was offered an appointment for an MRI for April or May of this year which Evelyn said was too far away, so she went private.
“Anna had an MRI scan on June 10 last year and we got a phone call on June 14. After that, we were welcomed into services with open arms.
Then on January 11, Anna had a second opinion on the MRI and it was discovered she was also visually impaired.
“Six years of bumping into things, walking into things, trying to read. It’s no wonder she hated school. She has all the resources now, but there is a lot of anger that if she had all these resources in place a long time ago she might not have built up that barrier to school.”
Evelyn said Anna broke her arm two weeks ago from a fall in school.
“School is a chore for her, everyday life is a chore for her. After being diagnosed, Anna was accepted for life-changing surgery in America and the doctor has guaranteed that if she has this surgery that she will maintain her mobility and that he will permanently remove the spasticity from her body and that she will be able to play all sports, but she needs this surgery as soon as possible for the best results.
“The surgeon guaranteed she will live an independent life in all environments without the need for a wheelchair or any walking aids, while here it is just a matter of time before she needs them.”
Anna will need two surgeries, Selective Dorsal Rhizotomy (SDR) surgery and Tendon lengthening (PERCS) surgery. She will have to spend five weeks in America for intense physiotherapy on her return to Ireland.
€100,000 is needed to cover the cost of the operation, therapy requirements, follow-up treatments and travel to and from the US, but without this surgery, Anna will lose her mobility in time.
“Anna has been accepted for this surgery in November but I got a call last week with a cancellation for May,” Evelyn said.
Evelyn said she wanted Anna to have the surgery during the summer so she would be recovered by the time school comes back around.
“It would be great to have the summer for her to recover not to have her missing school in November.”
The surgery is also available in Leeds and 15-20 kids have been referred by the HSE over the past few years, but when Evelyn asked the HSE to refer Anna they said she is not bad enough and they will look at her again when she is 13-14.
“We have lost too many years. We can’t go to town without a wheelchair or a buggy, we can barely manage to get from the car to the school.
“She describes the pain to me that an older person would have; her hips, her back and her knees are killing her.
“I can’t sit back and let her continue to live like this, while they say the spasticity doesn’t get worse, the symptoms get worse on a growing body.
“It’s the growth that does it and unfortunately, she is pretty tall. With every growth spurt, the damage to the muscles is getting further and further away from the brain.
“Even now if you ask her to wiggle her toes on her right foot she wouldn’t respond. If she thinks really really hard about it is will work but she will tap her head and say it is really hard work up here.”
Evelyn said she would love to see Anna be able to go for the surgery in America and she is reaching out to the general public to help her make it happen.
“Like every mother, you fight for your child. I would love some major support. It is a huge amount of money but when you look at the broad spectrum if every school in Cork held a colours day you would have that money.
“€2 a child, it is small in the scheme of things, and I know there are loads of causes day in, day out but I just feel as a mother, she had lost six years and I have to do my best to try and make it right for her. It is about doing the best thing for her.”
Any school in Ireland interested in supporting Anna by holding a colours day and donating to Anna’s campaign they can email firstname.lastname@example.org.
To donate to Anna’s campaign log onto her GoFundMe page: Anna’s Dream to Dance.
A spokesperson for South South West Hospital Group (SSWHG) said they do not comment on individual cases.