SMA Australia


Phone: (03) 9796 5744

story keira bove18/8/2008 – 26/8/2009

Our beautiful daughter Keira was born on the 18th of August 2008. We were so delighted to be first time parents and blessed with what everyone thought was a healthy baby girl. At 4 months old we became concerned with Keira’s lack of leg movements and head control. An appointment was made with the Community Health Nurse and on examining Keira we agreed she may have had low muscle tone, so physiotherapy was advised for her to strengthen her muscles. She didn’t enjoy some of the exercises we did with her and tummy time was very stressful always resulting in her becoming unhappy.

After 2 months of repetitive physio exercises we noticed very little improvement with Keira’s strength and an obvious loss of head control. In between this time at 5 ½ months we began swimming lessons with her, after her third lesson the swimming instructor also noticed Keira’s head control was very weak and suggested we go to see a Paediatric Chiropractor. We began chiro appointments on a weekly basis and she quite liked her treatment, this was continued all through Keira’s life, we believe it helped her in feeling comfortable and staying aligned.

We also had an appointment arranged to see a Paediatric Neurologist and at 6 ½ months the devastating diagnoses that Keira had a rare genetic disease called Spinal Muscular Atrophy was confirmed. This created frantic research into finding a cure to save our Keira. When all avenues were depleted and the realization that there was no cure for this disease all we could do for Keira was to ensure that she had the best quality of life for whatever time she remained with us. At 7 months of age Keira was admitted into Princess Margaret Hospital with breathing difficulties she was diagnosed with a cold, given antibiotics, and recovered well. She kept in good health for the next 3 months enjoying her milk and puree foods.

At 10 months she began having problems with swallowing and weight loss, the next stage for Keira was to have a nasogastric tube inserted for feeding. This decision although a very important one, was difficult to accept as we knew she would not be going back to eating puree foods and it was another step closer to the illness taking over her little body. The next 2 months saw many changes in her, severe deterioration of movement, change in body shape, weight loss, diminishing facial expressions, loss of verbal sounds and difficulty with bowel movement.

On the morning of the 26th August 2009, one year, one week and one day after her birth Keira peacefully passed away at home in her father’s arms.

Our Precious Keira
We held you in our arms for just a little while
Now we hold you in our hearts forever.
Mummy & Daddy