Our beautiful baby boy was born on July 29th, 2004. Then came the doctor appointments, investigative tests and emergency hospital visits. My husband and I were finally told the devastating news about Callum’s condition in 2005.
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He had Angelman Syndrome. I remember sitting there in shock asking ‘what is that’?
Angelman Syndrome is a rare genetic disorder of chromosome 15 affecting a gene called UBE3A. It results in a severe developmental delay, making independent life impossible. It is characterized by not only this global developmental delay but no or minimal use of words, a movement/balance disorder, a severe sleep disorder and life threatening epilepsy. It is estimated that it occurs in one in every 15,000 births (when we got our diagnosis in 2005 that statistic was one in every 30,000 births). It affects boys and girls equally and is present in all nationalities, races and ethnic groups.
Once the initial shock of the diagnosis wore-off, we were left with feelings of fear for the unknown and a heart breaking sense of loss for the healthy child we thought we would have. Why did this happen? How were we possibly going to cope with the challenges that lay ahead? Questions that kept us awake for weeks and months after the diagnosis. Eventually, we found the strength to meet the demands of each day. Step by step we got to the other side of our grief.
"Eight years later, I can honestly say that life would have never been complete without Callum."
Callum has taught my husband and me more about patience, unconditional love and hope in the last eight years than we could have ever thought possible. He brings out the best qualities in both of us....and in everyone he meets. People are drawn to Callum’s infectious smile.
Life with Callum is not all smiles and laughter. Family life is a roller coaster ride of medical appointments, caregivers in the home, filling out forms, operations requiring recovery and rehab, therapies, a relentless lack of sleep and worst of all, coping with Callum's uncontrollable seizures.
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Callum has Angelman Syndrome, but it doesn’t define him. He is an individual. With the help of others, he will be able to find his place in the world. He is an amazing little boy with a smile that lights up the world. He does not speak (yet!) but has much to share and teach us. It is simply incredible how much someone can communicate without a single word.
I always thought I would teach my son about he world, but it turns out I have to teach the world about my son. Despite an increasing diagnosis rate, the condition is still unknown which is why 30 Angelman Syndrome charities have come together to recognize "International Angelman Day" on February 15th.
You can meet my son and learn more about Angelman Syndrome at: OurAngelCallum.com