HAPPY FAMILY…The McCabe family, Kate and Kevin with their twin children Maeve and Francis
“Life is a battle for Maeve and Francis,
every smile, every hug is precious…
we are proud of our little fighters”
A FERMANAGH mother is appealing for support to help care for her “little angels”.
Kate McCabe (nee Lynch), originally from Drummerwinter, Aghadrumsee and her husband Kevin from Clontibret, County Monaghan are parents to five-year-old twins Maeve and Francis, who both suffer from rare conditions which incur substantial medical treatment costs.
Their two ‘precious babies’ were born on July 1, 2010, but Francis developed problems at an early stage and was on life-support in Dublin for five weeks with no improvement in his condition.
For the first two years of his life Francis was left battling a rare respiratory condition known as ‘ABCA3 Surfactant Deficiency Syndrome’, which affects just 27 children in the world.
The family were also told he had a hole in his heart and under-developed kidneys. In May 2012, just before his second birthday there was further heartache as Francis was diagnosed with Ketotic Hypoglycaemia, a serious metabolic disorder, which means he is at risk of going into a fatal coma if he is not tube fed at regular intervals 24 hours a day.
The family home has since been adapted to cater for Francis’ requirements.
Learning to live with a young child with serious medical concerns has been far from easy, with the parents having to deal with many sleepless nights. It was made worse when they started to become concerned about their healthy daughter Maeve, who at 10 months was not crawling, unable to put any weight on her legs and later began to have seizures.
At 20 months Maeve was diagnosed with a severe form of epilepsy and was having over 100 seizures every day. A special Ketogenic diet started in May 2014 has helped Maeve, but she can still have 40 to 50 seizures a day. Diagnosed with a very rare and devastating form of epilepsy called Progressive Myoclonic Epilepsy her condition affects less than 0.5% of all children with epilepsy and the cause is unknown. She is currently awaiting surgery to try and help reduce her seizure amount and severity. “Maeve’s epilepsy affects all aspects of her life,” explained mother Kate.
“She is unsteady on her feet and is difficult to carry as her muscle tone is very low. She has drop attacks. She is non-verbal and has a severe learning difficulties. Her sleep is disrupted and she also suffers from the same metabolic disorder as Francis. She has to have regular blood checks throughout the day,”
She continued:
“Every day brings new challenges for our beautiful twins. They have 10 consultants to attend at 10 different medical clinics in Temple Street. With every piece of medical news we receive, our dreams, normal dreams any mother or father would have for their children, are dashed. Dreams for our twins: Starting school. Making friends. Going to college. Getting a job. Meeting a future life partner. Having a family of their own.
“These are dreams we can not dream for Maeve and Francis. Our worries will not end when our children grow up, if our children grow up. What will happen to them when we are gone? Who will take care of them? What mother expects to be organising a family plot in the graveyard for her children as well as herself and her husband?”
In the five and half years since the twins were born, there have been 2000 sleepless nights, with Francis needing to be tube fed in the middle of the night and his oxygen levels monitored, while Maeve can have seizures both awake and when she sleeps and this can cause her to wake up very distressed, every couple of hours.
“Life is a battle for Maeve and Francis. Every smile, every hug is precious. We are proud of our little fighters.
“They say, as parents we teach our children about life. In our case, Francis and Maeve have taught us what life is all about.”