Imagine, for a minute, what it is like to be told your child may not live past her 6th birthday. We wanted to believe that they were wrong. Rebeka looked healthy and she was active.
Rebeka was born in November 1996. We were overjoyed and filled with love and anticipation for the years ahead. As Rebeka grew into a toddler, her personality started to develop, with her dancing eyes and huge smile, she was growing into an adventurous, funny little girl. Rebeka was reaching all the milestones any youngster would – except she had a constant runny nose and some digestive problems.
We looked for different ways of helping our little girl, including different foods and allergy remedies. Finally, when she was 2 years old and there was no improvement, we spoke again with her pediatrician about the ongoing issues.
That conversation led to a blood test and the result started us on a path we could never have expected. Our beautiful, funny, mischievous toddler was diagnosed with a rare degenerative neurological disorder called Mucopolysaccharidosis (MPS) Sanfilippo syndrome.
With the results of that one blood draw, our world shifted. We were told our little girl might make some progress in achieving developmental milestones, but that soon she would begin to regress. Initially they told us we would be lucky if Rebeka lived until she was 6 years old.
Rebeka grew and slowly the magnitude of this diagnosis began to sink in. Every time Rebeka would stumble on the playground, we would hold our breath and wonder if this was it, was this the beginning of the decline?
Rebeka’s tenacious spirit and love of life guided her through those early years. It wasn’t until she was 7 years old and began having numerous seizures each night that there was a sharp decline in her abilities. By this time we were physically and emotionally exhausted by the increased stress of caring for our daughter 24 hours a day and recognized the need for help with her care, including respite services. With supports, Rebeka was able to continue to attend her community school and participate in regular activities but as the years went on, her care needs became heavier and heavier.
Rebeka has changed dramatically over the years. She can no longer talk, she needs a wheelchair to get around, she receives her nutrition through a feeding tube and her medical and personal care needs are no longer manageable in our home environment.
Rebeka moved to St.Amant’s River Road Place last summer. The decision to move Rebeka was not made overnight and was an extremely difficult one to make. We considered so many different options, including homecare, a private tutor and continued respite. But at the end of the day, we knew that was not what was best for Rebeka. She now attends St.Amant School. She participates in recreation activities specifically tailored to her needs and interests. Rebeka receives clinical services including physiotherapy and occupational therapy right on site. She also has trained medical staff to care for her ever increasing medical needs 24 hours a day.
We knew that we made the right decision in moving Rebeka when after a weekend visit at home, we were bringing her back and she had a huge grin on her face and got excited the closer we got to River Road Place. She is a special little girl, and we have given her the absolute best all through her life – and we continue to do that now by choosing the best place for her to live.
We are extremely grateful that River Road Place exists, and to all of the staff that care for Rebeka everyday. We are grateful that her infectious spirit, her insatiable sense of humour and her love of life is recognized and nurtured by her friends and care providers. She is growing and happy and living each and every day to her potential.
Gaylene Hamilton and Andrew Pattison