FAITH Browne doesn’t only give smiles to the people she loves; but to everybody else too. It’s like she knows that she is a miracle girl.
“Hi!” she says. The three-year-old greets me with a beaming smile and a cheery wave.
“People say that Faith picks them up with her smile when they are down,” says mum, Lisa.
She’s a bit of a flirt too.
“Faith looks the women up and down,” says Lisa. “She has eyes for the men and she gives the men a hug.
“She has a really special bond with her grandad, Richie Browne, who was a great hurler in his day and he played against the great Christy Ring. Faith idolises him. Her face lights up when she sees him. Faith is a real character.”
Faith is also a little trooper, having defied the odds to survive when she was born. The tot, born at 30 weeks battled to survive a life-threatening condition, non-immune hydrops.
“It was touch and go,” says Lisa. “Fluid had built up around her heart and the doctor did an emergency procedure to draw out the fluid with a big needle. The fluid was compressing her heart. It took three chest drainages to get rid of the fluid. The doctor said it was like going into a balloon, it was so delicate. Faith was quite ill.
“She was a deathly brown colour. We were very worried that she wouldn’t survive. It was feared she wouldn’t come out of it.”
But Faith was named for a reason.
“I knew that she was a survivor; a fighter,” says Lisa.
“When she was baptised she seemed to get better straight away.
“Her name came to me in a dream the night before she was born while I was in hospital. Even when she was five days old and close family were called in to say their goodbyes, I knew in my heart that Faith would live.”
The miracle baby rallied. Incredibly, Faith, who was three in September, survived with the odds stacked against her.
“She got better gradually. But then when she had a brain scan we were called for a consultation. Faith had an extensive brain injury,” her mum explained.
Her parents discovered their daughter has Spastic Diplegia Cerebral Palsy, affecting her motor skills.
“Faith was on oxygen for a very long time,” says Lisa.
“One doctor said he was very concerned for her future and that maybe she would never go to school.”
It was a shock, coming so soon after Faith’s courageous battle for life.
“We were quite shocked to learn that Faith was severely disabled,” says Lisa.
She and Dave took heart and continued to have unwavering faith in their miracle baby. They were overjoyed at the prospect of bringing her home to Castletownroche. Big sister Lydia was mighty excited too.
“Lydia is really protective of her sister,” says Lisa. “They share something really special between them.”
But Faith wasn’t out of the woods.
“Then we got another hammer blow,” says Dave. “Routine tests showed up another problem.”
The brave little girl had Auditory Neuropathy Spectrum Disorder, leaving her unable to hear. In November she was fitted with a cochlear implant, finally starting her on the process of learning to speak.
“She has more than 50 words now,” says Lisa proudly.
“ANSD is a very rare disorder,” explains Dave. “More recently, Faith was diagnosed with epilepsy, which is very worrying.”
The tiny tot has battled more illnesses than many people do in a lifetime.
Lisa nods in agreement.
“Epilepsy is the most frightening thing. It frightened the life out of me. We are lucky that the rescue medication works. I am wakeful during the night when Faith is stirring. If anything is the matter, she can’t tell us.”
Lydia, 11, arrives in from school. She kisses her little sister and is rewarded with a wall-to-wall smile. It’s play-time. Faith can hear the children’s voices outside in the sunshine. She calls Lydia’s name. She wants to play too.
“It is very hard to look at Faith sitting up in the couch and watching her sister outside playing,” says Lisa. “She doesn’t know why she can’t play too.”
Faith’s biggest challenge is spastic diplegia. Due to stiffness, tightness, and balance issues in her legs, Faith is unable to sit up unassisted, crawl, stand, or walk.
“It is very hard when Lydia is playing with her friends,” says Lisa.
“Faith can’t understand why her legs won’t work like everybody else’s. It is heart-breaking that she can’t walk like the others. It seems so simple, but it is near impossible for her. ”
Another miracle is required.
“Surgeons at the St Louis Children’s Hospital in Missouri in then US believe Faith is a suitable candidate for Selective Dorsal Rhizotomy,” says Lisa. “It is a stroke of good luck.”
This procedure helps reduce spasticity and improve limb function.
Costs for the operation, including flights, accommodation, two to three years physio treatment and the equipment that Faith will need at home, will amount to €100,000. The operation is scheduled for September, 2017.
“It seems like a huge figure,” says Lisa. “But we have no other choice. We can’t get the operation or the continuous physiotherapy that Faith requires funded by the HSE here. It is a race against time.”
And all the people who have witnessed Faith’s joyous irresistible smile, all the people who know about her courageous battle for survival, and all the people who know and love little Faith, are right behind her.
The generous members of the public can give her one more miracle.
“The operation would change Faith’s life,” says Lisa. “Our wish is that little Faithy would be pain free and independent. This is her best chance possible.
“Her grandparents adore her. Her Nana calls her ‘my little Faithy’.”
The pioneering surgery involves operating on Faith’s back, locating the rootlets in the spine which makes the legs very tight. The surgeons will split them up which will aid walking.
“Faith will need lots of intensive physiotherapy for at least two to three years,” says Lisa.
“It will be hard, but it will be worth it all to see Faith walking with her sister.”
Like all parents, Lisa and Dave have wishes and dreams for their children.
“My wish is that one day Faith will walk up to her own bed instead of being carried there all the time,” says Lisa.
“My wish is that I can hold her hand in mine and that she can stay up herself and walk beside me on the beach or in the woods. My wish is that she can live a pain-free, independent life.”
Everyone wishes the girl with the sunshine smile will get the chance to enjoy growing up with her sister.
“Faith goes to pre-school three days,” says Lisa. “And to St Joseph’s in Charleville two days. They are always delighted to see her. Some days there is no stop. We are crazy busy with occupational therapy and physiotherapy appointments.
“Faith goes to Enable Ireland too. You would be exhausted from it all some days. Dave is great. He helps out in every way he can.”
Their miracle child keeps Lisa and Dave going.
“We are so proud of her,” says Lisa.
“She keeps us going. Faith is so bright and bubbly. We have has such great support since we started the fundraising campaign for Faith.
“I remember I saw a TV programme about a little boy similar to Faith who was going to America for the same operation,” says Lisa.
“He was in a wheelchair and his mother said; this operation will one day help my son to walk. My head was racing,” says Lisa.
“I was like someone with an itch. I started Googling and researching. Last year I said, this is it. I will fundraise for Faith. I don’t care how long it takes. It’s what she deserves.
“She fought battles for us in hospital. Now we must fight for her. We are delighted we are on the road to get there.
“We still have about €30,000 to raise. People have been fantastic. Tom Daly, who organised a charity run, and my cousin, Michaela Browne, are just two of the amazing people who are supporting us hugely. People have been fantastic. We couldn’t do this without them.”
Faith is taking all this in her stride.
Lydia arrives back and shares a sandwich with her sister.
What does Lydia wish for?
“That my sister could walk,” she says.
The girls are good pals.
“We do get on,” says Lydia, taking on the all- important big sister role.
“We go colouring and we play with the Peppa Pig ball.”
Lydia doesn’t get to play the game all her own way.
“Faith is a determined little lady and head-strong with it,” says Lisa. “It is the way we wanted her. She knows her own mind. We couldn’t be more proud of her.”
Lisa and Dave know there is a long road ahead and they know they that have done what they can to give their daughter a chance for an independent life.
“We know that the surgeon is top of the job,” says Lisa. “He will do his best. Giving her this chance is all we can do. Faith will be in the best hands possible. The surgeon will look after her and we will mind her for the rest of our lives,” says Lisa.
“Faith is a great warrior. I always knew that she would survive even when I was told that she wouldn’t.”
Faith’s smile lights up her dancing eyes.
She knows that she is her parent’s miracle child.
HOW YOU CAN HELP
To donate, see the Hope for Faith page on gofundme. com.
On May 22, multi-award winning photographer, Mark Condren, is hosting an evening in Castletownroche community centre, €20 admission, all proceeds to Hope for Faith. Contact Harry: 085-1583954 for more.