FAMILY TIES?Tommy O’Donnell is pictued with his parents Dennis and Michelle O’Donnell and his sisters Megan, Katelyn and Shauna O’Donnell.?Pic: Kathy Lyons
Brave Belmullet family fights for their future
Serious diagnoses for father and son leads to community fundraisers
IT is mid-afternoon in the village of Drum, beyond Binghamstown, on the Mullet peninsula in Erris and Dennis O’Donnell is feeding his beautiful baby daughter Shauna. Nicknamed, ‘Chuckles’, she smiles and gurgles as she enjoys discovering the dexterity of her chubby little arms and legs as she sways in her multi-coloured walker.
Her older brother, three-year-old Tommy, is lying nearby and is also moving his limbs but it is in a more languid and droopy way. Tommy has just had a seizure and his Mum, Michelle, places him gently on a mat to help him recover from it. It was one of many in the last half-hour but the others were petit mal and therefore much shorter in duration.
When this Mayo News reporter arrived earlier Michelle was holding Tommy who she had just finished feeding intravenously. The fact that he has a rare and life-threatening condition known as Lissencephaly and that his Dad has recently been diagnosed with Carcanoid cancer does not dampen the warm welcome and openness of this brave and good-humoured young couple.
Michelle, with a twinkle in her eyes, finds it easy to flit back to the early 2000s when they first met while Dennis was home on holidays from the Cayman Islands, where he worked in the hospitality industry
“He took one look at me and left that beautiful sunny place,” jokes Michelle, a native of the village of Balla.
Although nine years later he did go back to the Caymans. Well, it was to bring his new bride on honeymoon aboard a Caribbean cruise ship after their wedding ceremony in Balla and reception in Pontoon.
But it was back straight away to the home-turf in Erris then and their lovely new home beside Dennis’s ‘hilarious’ parents, Maureen and Brendan.
“They have been through everything with us, step-by-step. In fact, the support from both our families and the communities here and in Balla has been unbelievable,” says Michelle.
After they got married, Michelle continued to work as a carer in Westport driving the 100-mile round trip each day while Dennis worked as a lorry driver delivering oil.
At that stage they had two little girls, Katelyn (12) and Meghan (8), and were secretly hoping for a boy when Michelle became pregnant again.
“We were very excited for Brendan (Grandad) next door when we discovered I was pregnant with a boy. He’d have his little man to bring on the tractor and Dennis would have someone to watch the Liverpool matches with him, since us girls had no interest! Honestly, we nearly had Tommy’s whole life planned out for him before he was even born.”
IT was coming up to Easter 2011 and Michelle was nine days overdue and heading on the bumpy road from Belmullet for an appointment at Mayo General Hospital, Castlebar, with her in-laws and the girls, when she suddenly went into labour. They were still in Bangor Erris and the pains were coming faster and faster.
“We were only in the hospital for 20 minutes, when he was born. That was my first shock. The next shock was his red hair; that was courtesy of Granny O’Donnell. The more people that admired the red hair, the prouder she was.”
Tommy was a very quiet baby from the outset but as time passed Michelle became concerned about the increasing ‘mucusy noises’ he was making while feeding. But it wasn’t until four-and-a-half months later, at the end of August, when “Uncle Tommy” , Dennis’s brother, came home from Birmingham to get married, that the couple began to realise all was not well with their beautiful little baby boy.
“The house was really busy with lots of visitors coming and going. And for three evenings in a row our quiet little man started to cry. I had just begun feeding him solids and thought it might be a reaction to that. But then on the third evening he started screaming and screaming and then suddenly flopped. I called Dennis and we drove to Belmullet hospital where the doctor thought it was an asthma attack and gave him a nebuliser.”
An ambulance then arrived and brought him to A&E in Castlebar while Michelle worried that they had over-reacted and had made a big drama by going to the hospital. But then Tommy had a seizure in front of the doctor and was so ill he was treated and monitored throughout the night in MGH.
After a CT scan the following morning, he was sent by ambulance to Temple Street Children’s Hospital.
“We were following in the car and you would never believe it but it broke down in Edgeworthstown and we ended up calling the guards and being brought up in a squad car. They were brilliant.”
At that point, though, the couple ‘really didn’t know what was going on’.
“I think our worst fear was that he had epilepsy,” says Michelle.
Indeed, the medical team had told them to take a break from the hospital and they were on their way to Penneys on Henry Street to buy clean clothes when a phone call from the hospital would change their lives forever.
Michelle will never forget that long walk back to Temple Street as they both sensed they were about to hear something very serious. Michelle’s stomach was lurching as she watched the team stand in a circle around their little boy’s cot.
“We have identified what is wrong with him,” the consultant said.
An EEG (Electreoncephalography) scan showed that Tommy’s brain waves were abnormal and then a subsequent MRI scan confirmed the seriousness of his condition.
The feeling was surreal as he uttered the name in slow-motion: Lissencephaly.
“All I can remember is that he said: ‘He will never walk and he’ll never talk’. They gave us a document with a diagram and said our brain was like a cauliflower and his was like an egg. I looked at Dennis and saw how upset he was.”
“I wish I could go back to that moment and that the doctor would say something else,” Michelle says, tears welling-up in her eyes.
She continues: “One minute we had a healthy child and the next minute we had a child with a short life expectancy who would remain at a five-month developmental level for the rest of his short life. We spent the following days and weeks crying and crying. We were mourning for Tommy,”
Tommy O’Donnell cannot swallow at all and is peg-fed over a 20-hour period each day directly into his small bowel. He has a gastric bag that manages the build-up of acid and air. He is also on constant medication for seizures but still has up to 15 each day, some of which are petit mal.
Along with great familial and community support, the family receive respite from a Jack and Jill Foundation nurse and the HSE. They also receive help through a local Community Employment Scheme.
IF this wasn’t enough of a challenge, Dennis was diagnosed last April with carcanoid cancer which started in his bowel and has spread to his liver, a lung and his hip-bone. Ironically, this latest blow happened during a relatively happy time for the couple as they prepared to christen baby Shauna, (‘Chuckles’) who was born in February.
“Over the previous months I was having pains in my shoulder and right-hand side but thought it was from pulling the heavy hose on the oil lorry. But by the day of the christening it had really intensified and on Easter bank Holiday Monday, three days after Tommy’s third birthday, we went to A&E in Castlebar,” Dennis explains.
Initially, the doctor thought it was gallstones but after a series of blood tests, a colonoscopy and ultrasound that diagnosis was ruled out. Ultimately, a biopsy on Dennis’s liver confirmed the diagnosis.
Treatment may contain the progression of the cancer but Dennis can no longer work and is now on a Disability Allowance and Michelle is a fulltime carer, while they both also parent and love their other ‘wonderful’ children.
BOTH the communities of Balla and Belmullet have initiated fundraising drives to help the O’Donnells care for Tommy at home, build a necessary extension, buy essential medical equipment and assist the family with living expenses. The Tommy O’Donnell Trust Fund organised a Balla 10k Road Race recently to raise funds while Daoine le Chéile in Belmullet are organising a Benefit Dance in the Broadhaven Bay Hotel on Tuesday, August 12. Tickets are on sale for €10 locally and on the door.
Facebook pages: Tommy O’Donnell Trust and Daoine le Chéile. If you wish to fundraise for the Trust, please email firstname.lastname@example.org with details of your proposed event (eg what it is, venue, time/date etc).
Donations can also be made online on www.idonate.ie/tommyodonnell. Follow Tommy O’Donnell Trust on Twitter at @tommyodtrust