I read the Sam’s Steps press release ‘Sam’s Story So Far’ sent to me which documented little Sam Grant’s struggle since he was born 5 years ago. Due to a number of complications Sam’s parents Hilda and Dave were told by doctors that Sam would not make it to his first birthday. As I read the words and the harrowing news of what Sam and his family have endured over the past few years tears rolled down my cheeks.
So on Saturday I ventured along to The Grasshopper Inn, Clonee to meet Sam, his wonderful family, their friends and supporters at a family day organised by Sam’s Steps Charity. Sam’s Steps was founded by family friend Elaine Swift and the event was organised in association with Crossbar Trust Charity. As part of the day there was a 50K cycle, 5K walk, bouncing castles, face painting, a BBQ, live music and a raffle.
Olympic boxing champion Michael Carruth was there and he started the 5K walk with Sam and his family. Sam in his walking aid took the first few steps of the walk with his family and friends cheering and leading him on his way. I was amazed at his strength and eagerness to start walking. I was melted by his smile and delighted at his interest in my camera.
The whole idea of the day was to raise awareness and to raise money for Sam to continue his treatment at First Steps Therapy Clinic in Limerick where he is learning to walk. Sam’s mam Hilda told me that he is also learning sign language.
I’d like to say what a privilege it was to meet Sam and his amazing family in Clonee on Saturday.
I’d like to wish Sam a very happy 5th birthday this Monday 24th.
Please read ‘Sam’s Story So Far” taken from Sam’s Steps Facebook page. Thank you.
Sam’s Story So Far
If you didn’t know Sam Grant & you were to meet him for the first time – first of all a little bit of your heart would be stolen forever & second of all you would never guess the story of fierce battle that lies behind his big beautiful smile.
Sams battle started 24th August 2010 – the day he was born. Following a traumatic delivery Sam was resuscitated & moved straight to the Neonatal Intensive Care Unit. After some time Sam was discharged home to his loving family but cried constantly & failed to thrive, after 8 weeks at home with his mammy & daddy struggling to comfort him he was admitted to Temple Street Children’s Hospital. In October 2010 Sam was diagnosed with poor muscle tone, poor suck reflex & severe reflux. As a result of this condition he had dangerously aspirated milk into his lungs & much to his families distress was placed on oxygen & could only be tube fed. Sam continued to be unwell & many worrying trips to Temple Street ensued.
On the run up to his first Christmas Sam became seriously sick & was admitted. Aunty Denise & the family rallied around even arranged for Santa to make a special stop Temple Street for our little Sam but on Stephen’s Day Sam deteriorated & the doctors feared he had contracted the deadly Swine Flu – Sam was rushed to ICU & placed on life support for 17 heartbreaking days. Thankfully Sam bravely fought to stay with us but faith dealt another blow when during his recovery doctors discovered Sam had potentially life threatening encephalitis.
In February after weeks of poking, prodding & reams of tests Mammy & Daddy where called to the Neurologists office – while the world continued to spin on its axis Hilda & Dave Grants lives came crashing to a stand still – they were told their baby boy Sam would never walk, talk, was cortically blind & had only a few months to live. As far as the professionals where concerned Sam could not & would not see his 1st Birthday.
What could they possibly do – the only thing they wanted to do was to bring Sam home to his family & love him as long as they could. In this instance you would imagine it was a straight forward move but the medical support & resources you would expect to be a given just weren’t there & the HSE struggled for two months to arrange a Home Care team for Sam. Sam finally came home in June 2011 with a heaven sent 24 Hour Palliative Care Team in tow & with the much appreciated support of the Jack & Jill Foundation.
Sam was a seriously ill baby & despite having nurses at home Sam continued to have to make emergency dashes to Temple Street. Sam began to have apnoeic episodes where he would stop breathing – there where many times we thought is it today – is Sam leaving us today??? Our Sam decided he had too much to do, there is just too many lives to light up – Sam was sent to the Grant /McAuley family for a reason – Sam was made of tougher stuff.
After many more tests Sam along with all his other illnesses was further diagnosed with Obstructive Sleep Apnoea & more medical equipment was required at their home. Day to day life for this family has been as tough as it gets – with Oxygen Machines, CPAP machines, Apnoea Monitors & Feeding equipment there was always some machine worryingly beeping, always a nurse /doctor at the door- never a day or minute when or where they could forget the doctors bleak prognosis.
Days, weeks, months became a blur & yet it seemed August 2011 was approaching? Sam made it to his 1st Birthday & albeit he spent it in Temple Street – what a celebration it was! Even the news Sam had developed Epilepsy could not dampen Hilda & Dave’s new found optimism – Sam had made it to one years of age – could the doctors have got it wrong?? Maybe just loving the bones of him & believing in him will pull him through – loving Sam Grant is easy it was certainly worth a try! As long as Sam had it in him to fight we would fight.
It hasn’t been easy, there have been many set backs along the way but could we dare to believe that Sam was getting stronger? If we stopped to think about it, was Sam’s hospital admissions becoming less? Was there hope or should we tempt faith to even dream? The Grant family continued to live life day by day.
After many more ups & downs at 18 months old Sam was weaned off his feeding tube & was managing through the day without the support of his oxygen machine. By Sam’s 2nd Birthday the 24 Hour Palliative Care Team were withdrawn from the home. To this day Sam continues to defy the odds.
Sam is now 4 years old, sure enough with the love & support of his super Mammy, Daddy, Sisters, Brother, his Aunty Dee & a strong circle of family & friends, despite every hurdle he has faced Sam continues to amaze all around him. Today Sam attends both Child Vision Pre-School for visually impaired children & Oakridge Pre-School for children with intellectual disabilities – he is the life & soul of the party at both – when he’s not wrapping the teachers around his little finger they work very hard stimulating & setting new challenges for him to conquer.
While Sam regularly attends physiotherapy through Temple Street Hospital sadly the department is seriously under-funded, under staffed & under equipped. The waiting lists for equipment & aids that Sam urgently needs are lengthy to say the least.
Through talking to other families with children with similar challenges Sam’s mammy Hilda came to learn of a clinic in Limerick that specialises & pioneers in neuro-rehabilitation. Hilda decided she had to give Sam every opportunity she could to reach his full potential – after a private fee paying consultation at First Steps Therapy Centre the specialist is confident that with intensive therapy there is hope that Sam might just walk.
At the families own expense Sam started Therapy in August of this year. With the extended family looking after Hilda & Dave’s other 3 children, Hilda has been travelling up & down to Limerick every other weekend with Sam for treatment. Even in a number of weeks the difference in Sam’s muscle strength is amazing, he is gaining confidence & Sam has gone from sitting to pulling himself up to stand. With this huge development the Therapist is recommending Sam attends more intensive programmes. Often the best treatments are the most expensive & more therapy sessions means more fees to the specialist & more overnight trips to Limerick – because of the HSE waiting lists for equipment & aids that Sam needs the family have had to purchase these themselves & sadly funds are dwindling & the family have exhausted every financial avenue open to them.
There are lots of things that can be done to make Sam’s life better but for now our aim is to give Sam the chance to try to walk – if Sam has it in him to keep fighting then we at Sam’s Steps are going to do our best to provide that opportunity.
Can you help Sam take his first steps?
~ Prof Patrick McNally, DCU