SPECIAL?Grace O'Malley is pictured at her home in Robeen.?Pic: Trish Forde
A community is rallying around to help a little girl in south Mayo
MONDAY, August 4, 2009. Paul and Lorraine O’Malley’s daughter Grace was born.
“Like winning the lottery” is how mum Lorraine described it. They had moved into their new home in Robeen in south Mayo the previous Friday. All was well with their world.
Grace was reaching all her milestones. Getting about in her walker and crawling later. Then a few little things of concern to her parents. She wasn’t pulling herself up in the cot. For peace of mind an appointment was made with Castlebar-based paediatrician Dr Gabriel Fox.
Leaving nothing to chance, he referred Grace to Temple Street Children’s Hospital in Dublin for further tests. Dr Fox categorised all the muscular conditions and the different treatments for Lorraine and Paul. He expressed a hope it wouldn’t be SMA.
The final tests revealed Spinal Muscular Atrophy Type 2. Not thinking of the abbreviation, Lorraine’s reaction was relief that it wasn’t SMA. But Dr Fox filled in the blanks for her.
“I’ll never forget his words. He said, ‘It is SMA Lorraine, and pneumonia could kill her’.”
Aware that the startling diagnosis was enough for Paul and Lorraine to deal with, he advised them go home and return later with their questions.
The day lent itself to bad tidings. Lorraine remembers driving home in the pouring rain in floods of tears. From her hearth she can see Robeen church. It was every other utterance but prayers she sent skywards that afternoon.
Later that evening Paul and Lorraine summoned both their extended families to their home. The memory of that evening has stayed with Lorraine. “I’ll never forget it and the awfulness of having to tell it to those closest to us. I think that was the worst part.”
There was a period of grieving and coming to terms with their lot. Then a question from Lorraine’s sister Niamh (Corcoran) put everything into perspective.
“I was talking with Niamh one day and wondering how I’d possibly cope when she asked me, ‘Would you change Grace?’ Niamh pointed out to me that she was still the same Grace and a diagnosis wasn’t going to make any difference to her personality. It was exactly what I needed to hear and I realised immediately how true that was. It was an iconic moment and I just moved on from there.”
Family and work colleagues rallied round. “We had to build an extension onto our home for Grace,” explained Lorraine, a native of Ballinrobe. “Our families, friends and our good neighbours here in Robeen helped us giving freely of their time and labour to make it possible.
“We were referred to the CRC in Dublin to a specialised clinic where we met a lovely lady who works with Muscular Dystrophy Ireland. She recommended a powered wheelchair for Grace. I was slightly reluctant at first only because I didn’t want to see her in a wheelchair, I suppose. But I had to put my own feelings to one side and do what was best for Grace.
“The services here in Mayo said she’d only be entitled to a manual wheelchair until she was five or six. But that decision was based purely on costing. We persisted and eventually she was given a powered wheelchair. It took her a while to adjust to it, but she’s managing fine now.”
“That’s what annoys me most,” continued Lorraine. “You’re only requesting what she’s fully entitled to. You fill out reams of application forms and all you get is bureaucracy putting obstacles in your way. Then out of desperation you contact your public representatives and you shouldn’t have to go that route. And all you get from politicians and councillors is lip service and idle promises.”
Another recurring problem is wheelchair access in public places and buildings. “Except for one parking slot in Ballinrobe, there is no other place a powered wheelchair can mount a footpath because of the high verges. But when I approached the Mayo County Council they advised me to contact my public representatives to provide the necessary funding.”
Life goes on. Grace has a little brother Mark to share her world with now. She’s not hindered by overprotective parenting and lives life as normal as possible. Every second week she goes to the Safari Club in Moneen, Castlebar, for physiotherapy and other exercises. Niamh is fulsome in her praise of the excellent services available there.
Grace attends ‘Robeen Rascals’ playschool and starts main school in Robeen next September. School Principal Bridie O’Malley has assured Paul and Lorraine that everything will be done in the building to facilitate Grace and her needs.
Other good things are happening. On Friday night the participants in the Ballinrobe Slimpossible competition will present the proceeds of their fundraising to the ‘Friends of Grace’ and a trust fund will be set up for her to meet Grace’s future needs. She urgently requires a lifting hoist and other aids. Lorraine and Paul are indebted to the local community for their generosity. “Humbled by it” is how Paul describes it.
Lorraine says it’s something they never expected. “We know the amount of effort and commitment people are giving to this and we’ll be ever grateful to them for their generosity. All spending will go towards providing the equipment necessary to give her a better quality of life.”
And that’s all Paul and Lorraine O’Malley want for their little girl. They’ve come to terms with Grace’s diagnosis enough, and focus on the positives, as well as showering her with the love and support she needs. Lorraine sums it up best.
“We take each day as it comes. We still shed tears but we find lots of things to laugh about too. And we always have the help of our friends and families to get us through. My sister Niamh was so right. She’s still the same Grace she was before the diagnosis.”
Still the same amazing Grace.
FAMILY TIES?Paul and Lorraine O’Malley are pictured with their children Grace and Mark.?Pic: Trish Forde