Welcome to October Rett Syndrome awareness month.
Rett Syndrome is a devastating condition. While it is from birth the symptoms aren’t usually noticed until the second year of life. I watched my beautiful 22 month old daughter Livvy go from a smiling happy toddler into a screaming demon. Gone were the words I loved to hear, mom, dad, yes, no. All her beaming personality was lost to the syndrome. At this time I didn’t believe life could get any worse how wrong I was. On November 7th 2008 Rett Syndrome took my daughter from me.
Complications are many, including:
- Disordered breathing
- Severe digestive problems
- Difficulty eating, chewing and swallowing
- Orthopaedic abnormalities such as scoliosis and fragile bones
- Disrupted sleep patterns
- Extreme anxiety
- Impaired cardiac and circulatory function
- Parkinson-like tremors
- Sudden and unexplained death
Livvy suffered from most of the above. She lost the ability to walk when she was 5 years old due to the amount of seizures she suffered, 106 in one day before we gave up counting. In her last year of life and through sheer determination on her behalf Livvy walked again. How I hold these memories close.
Rett Syndrome took so much from Livvy yet after the period of regression I found myself admiring this spirited young girl with so much zeal for life. While they were still many periods of frustration and tears, Livvy was full of joy and laughter. Rett syndrome was what she had not who she was.
I won’t even pretend to tell you I never considered losing her, I did a lot. There were many nights of endless tossing and turning as I tried to deal with this fear. It wasn’t possible I was scared. Yet as a family we tried to follow Livvy’s example and live life to the full. She was, she my inspiration.
When that dreaded day came November 7th 2008 my life fell to pieces, I had always prayed with would be able to fight every battle Rett Syndrome threw at us. This was one battle we weren’t to fight. Livvy passed in her sleep, peacefully yes but unexpected.
As of yet there no cure for Rett Syndrome but thanks to the amazing discovery in 2007 there is hope. Real hope, but like everything in life this comes at a cost. Research into Rett Syndrome is making amazing strides forward but the financial cost of the research is a barrier. Please consider ways you could help support Rett Syndrome Research Trust as it works with one aim in mind to accelerate treatment for Rett Syndrome.
Fundraising, dedications, legacies are just some of the many ways you could help.
Yes it may be too late for Livvy, something I am very aware of but it is not for the millions of others.
If at this time you are not financially able to help please help by spreading awareness and of course please pray for the cure.