Enable Ireland helps brave Galway girl achieve her ambitions

This is No Limits Week, Enable Ireland’s annual effort to highlight the work the organisation does to make life so much better for those who use its services – like nine year old Lucy MacConnell from Spiddal. Here her mother Dr Niamh O’Brien MacConnell tells how Enable Ireland has helped her daughter live her life to the full.

Our daughter Lucy has Osteogenesis Imperfecta Type 3, a severe brittle bone condition that results in her being of short stature with a high risk of fractures.

Lucy MacConnell enjoying summer camp at Enable Ireland Galway.

She has recently turned nine and will be starting in Rang a 3 at her school, Scoil Éinne, An Spidéal, this September.  Lucy’s older sister Orla (11) is going into Rang a 5 in the same school.

Lucy continues to be full of life and full of fun, with a busy schedule of school, activities, play dates and birthday parties.

She made her First Holy Communion in April of this year and we had a wonderful day of celebrations to mark her momentous milestone. And she did herself and us all so proud by walking to the altar in her walker with all of her classmates.

We had a big party at home for our family and friends and sun shone for Lucy’s special day.  Lucy danced and bounced all day to the music in the Disco Dome bouncy castle.

Some big news for our family was the arrival in February 2014 of Lucy and Orla’s little sister Annie.  Lucy is delighted not to be the youngest anymore!  Annie is a lively little lady with a head of blonde curls and she has kept us all very busy!

Lucy is a very patient big sister and has helped us to explain to Annie how she must be gentle with her, this has been more of a challenge as they are now the same size, despite the age gap.

Lucy has asked a lot of questions about Annie’s size and is now old enough to understand that her own small size is because of her fragile bones but that she can still strive to achieve all of her goals as a smaller person.

Lucy’s fragile bones have to be looked after to ensure they grow straighter and stronger, so she continues to have her infusions every three months of pamidronate, a bone-strengthening medicine, under the kind care of the staff at St Bernadette’s Paediatric Unit in University Hospital, Galway.

Lucy has also had several rodding surgeries, where a metal rod is inserted into her long bones to straighten and strengthen them. She attends Crumlin for these surgeries under the care of her wonderful orthopaedic surgeon Jacques Noel.

Lucy now has telescoping rods in both of her femurs, these grow with her as she grows. She is currently waiting to have the rods in her tibias replaced with telescoping rods too.

Lucy also had one of her arms rodded with a telescoping rod last November, this was done in Sheffield Children’s Hospital in the UK, where she was looked after by Mr James Fernandes, an excellent orthopaedic surgeon with a special interest in upper limb surgery.

These surgeries usually result in missed school time for Lucy, but she is very brave and works very hard with her rehabilitation and physiotherapy so she gets back to her friends at school as quickly as possible.  She also keeps up with her schoolwork when in hospital and recovering at home.

Lucy continues to receive Personal Assistant hours from Enable Ireland and she has been lucky enough to have had the same amazing PA for many years now.

We have a very close relationship with Lucy’s PA Fiona Boyle, and she provides Lucy with immeasurable help and support each week.

In the past two years, Fiona has supported Lucy in attending a local children’s art class after school every Tuesday.  She also brings Lucy to some of her appointments and often supports her at swimming lessons.

Hydrotherapy is a particularly important form of rehab for Lucy and helps her to recover from both fractures and surgeries.

We had a very special family holiday to Disneyland Paris last November, where Lucy got to meet a Disney Princess and all her favourite characters and enjoy so much fun and excitement all day long, at the parade every evening and at the fireworks each night.

Lucy’s favourite things are swimming, art, playdates with her friends, playing Minecraft with her sister and minder Amy, Sylvanian families, Ever After High and watching Full House on Netflix!

Lucy accesses her school-aged therapy services at Enable Ireland Galway, where she receives physiotherapy, occupational therapy, assistive technology support – including school staff liaison – and orthotics reviews.

The multidisciplinary team liaise with Lucy’s paediatricians and surgeons locally in UHG, in Crumlin and in Sheffield Children’s Hospital.  We are lucky to have a team that are so dedicated to their work in helping Lucy to reach her full potential.

Every day is a big adventure with Lucy.  She has a vivid imagination, a sparkling sense of humour and she loves to play most of all.

Lucy has taught us that life needn’t be so serious, she is definitely a girl that just wants to have fun!

■ Enable Ireland’s national fundraising and awareness week, No Limits, takes place all this week, running until Sunday and raising much needed funds for the Enable Ireland Galway service.   You can support by purchasing the Enable Ireland kite-branded merchandise at TK Maxx store, the Enable Ireland shop on High Street or from any of their on-street sellers.