The parents of severely ill twins Maeve and Francis McCabe are appealing for help as they face increasing medical bills for the treatment of their “little angels”.


The brother and sister were born prematurely, at 34 weeks, in 2010 in Cavan General Hospital; the first children of Kate (née Lynch from Aghadrumsee) and Kevin McCabe, from Clontibret, County Monaghan. 


Immediately, baby Francis deteriorated and the first two years of his life were spent battling a rare form of respiratory distress. Aged two, he was also diagnosed with 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. 


As Kate and Kevin acclimatised into a life of sleepless nights and constant medical care, they were devastated when their daughter Maeve was diagnosed with an extreme form of epilepsy. She suffers from up to 50 seizures each day and has the same metabolic disorder as her brother.


Between them, the McCabe twins have 10 consultants at 10 different medical clinics in Temple Street Children’s Hospital, Dublin.


“Life is a battle for Maeve and Francis. Every smile, every hug is precious. We are proud of our little fighters,” their mother Kate told The Impartial Reporter.


"We don't know what the future holds. We endeavour to give our children as normal a childhood as possible and trouble shoot any problems that arise from their multiple diagnosis. Children are children for such a short time; we don't want to waste their childhoods by grieving of what should have been.”

 

Looking back, Mrs. McCabe said: “I only got a quick glance at the little angels before they were whisked off to the special care baby unit. At 21 hours old, Francis deteriorated and developed breathing difficulties and a fast heart rate.


“One week later, Francis was put on to life support and transferred to neonatal intensive care in Holles Street, Dublin, where he was to remain for five weeks with no improvement in his condition.


“In August 2010, Francis was transferred to Temple Street Children’s Hospital where he remained for three months during which time he was seriously ill. On many occasions we nearly lost him. Our only comfort in this horrific time was our beautiful little girl, Maeve. She was a very placid baby and gave us joy and solace in what was a harrowing time.”


The McCabes soon learned that their son had an extremely rare condition – ABCA3 Surfactant Deficiency Syndrome.


“Our world collapsed. We were devastated and heart broken as we watched our infant son fight for every breath he took. We never knew if the next one would be his last. He gazed at us intently and his eyes told us  that Francis was not giving up without a fight," said Mrs. McCabe.


Aged nine months, Francis was finally brought home for the first time and the house was modified to supply oxygen 24-hours-a-day and to install various medical equipment that monitored his condition.


Just before his second birthday, Francis was diagnosed with Ketotic Hypoglycemia and he also displayed developmental delays and was non verbal. He was later diagnosed with autism and a learning difficulty. During this time Francis also underwent surgery in London to insert a feeding tube into his stomach.


As the McCabes got on with family life, albeit in highly stressful circumstances, they began to become worried about their daughter’s health.
“We started to become concerned when, at 10 months old she was still not crawling,” Mrs McCabe said. “We then noticed that our little healthy girl was having seizures. At 20 months old Maeve was diagnosed with an extreme form of epilepsy – progressive myoclonic epilepsy. At this stage she was having over 100 seizures every day which has been reduced to 50 by a special ketogenic diet.”

Each night is a sleepless one as Kate and Kevin monitor the twins’ blood levels and deal with Maeve’s seizures.


“Every day brings new challenges for our beautiful twins,” said Mrs McCabe, who adds that the normal dreams that most parents have for their children have been dashed.


Mrs McCabe faces very difficult questions: “What mother expects to be organising a family plot in the graveyard for her children as well as herself and her husband?” she said.  “Our worries will not end when our children grow up, if our children grow up. What will happen to them when we are gone?”


In the Republic of Ireland hospital stays, prescriptions, GP and A&E visits, and equipment are not automatically free unless you have a medical card, which is means tested. The twins have a discretionary medical card but it is due to expire in July and the McCabes are not sure if their children will be deemed eligible for the medical card going forward. When they turn six this year, they will be moved into the 'childhood team', where Mrs. McCabe fears that “resources are even more scarce” and expects that they will be placed on a year long waiting list. Because of these concerns, the family has decided to go down the private healthcare route.


“We want to give the twins the best chance to reach their potential and time is of the essence. For this reason we need to go down the private route.”
She said: “The costs involved in taking care of the twins is substantial. We need your help in raising raise £50,000 to pay for specialist care, therapy, mobility equipment and a night nurse.”


A fundraising committee has been organised and a fundraising night has been arranged in The Glencarne, Castleblayney on February 6.

 

Tickets can be purchased or donations can be made online using Visa or Mastercard at https://www.eventbrite.ie/e/mccabe-twins-fundraiser-joe-murray-the-texas-wildcats-tickets-donations-tickets-20415711944

 

Donations can also be made direct to Bank of Ireland

Account name: Maeve & Francis McCabe Fundraising

Address: Alveragh, Clontibret, Co Monaghan

Sort Code: 901116

A/C No: 49936942

BIC: BOFIIE2D

IBAN: IE51BOFI90111649936942.

 

Details are on Facebook at: McCabe Twins Fundraising Dance