Sara is a three year old little girl with the most contagious smile I’ve ever seen. Her story is tragic and painful to take, and despite all challenges, Sara and her mom continue to fight – sometimes a losing battle –
for a better life.
Sara was born with a multitude of health issues, only identified when she was eight months old. When you first meet Sara, her smile captures your heart like a magnet. That smile however, is hiding the fact that she is blind, she can’t walk, stand, sit, or talk. Her smile, is the only way she can tell you how happy she is to meet you. Every time I see her, I want to tell her as loud as I can how much I love her, even though she can’t always hear me.
Sara's long list of diagnostics can help better understand the severity of her condition:
– Severe Global Development Delay,
– Severe Bilateral Optic Nerve Hypoplasia,
– Peripheral Hypertonia,
– Central Hypertonia,
– Xq 28 Chromosomal Mutation,
– Seizure Disorder,
– Chronic Asthma,
– Chronic Constipation.
As anyone can imagine the quality of life that mother and daughter have is quite low. There are only a few children in Canada in the same condition like Sara, which makes caring for her so much more difficult. Doctors don’t always know what to do when she has symptoms, or arrives at the ER with high fever, or continuous and unexplained pain. In many cases, she is treated on a trial and error approach.
To add salt to an open wound, Sara is being raised by a single mom, with almost no income. Due to Sara’s condition, Ana can’t have a job and her income is only $700/month in social assistance. That amount can’t even cover the rent, at $845/month. Having an organic only diet, their groceries cost per month can exceed $1000 sometimes. Since introducing “real food” to Sara, free of pesticides and eliminating the hospital provided formula (filled with damaging ingredients), Sara’s constipation improved immensely. She went to the ER more than once with seizures triggered by bowel movement pain.
Whenever Sara is sick and they have to run to the ER in the middle of the night (or day), Ana can spend days and days with no sleep. Because Sara can’t communicate, Ana is the only one who can “read” into whatever cries or sounds she makes. Ana also treats her daughter as any other child, with same chances, right and opportunities to a better life. She doesn’t want her daughter to spend her life in this state, especially knowing that there is hope. I have met strong women and mothers, who fight for their children with their last breath. Ana is a force of nature, and tops any list of "fighter moms". Even in the toughest of the circumstances she is strong, and continues to fight for her daughter.
THE STEM CELL TREATMENT
After numerous genetic and metabolic testing, doctors still can't figure out the cause of our little angel's dysfunctions. The only treatment that can help is a stem cell transplant, which at this time is not available in Canada, or the US. Sara's mother sent all her medical records to the Stem Cell Institute of Panama, where after review and interviews with the specialists, Sara has been accepted for transplant (see email attached ).
The cost of the treatment, travel and insurance is over $25000, and Ana has no way of obtaining that amount without our help. Myself and those close to Sara, who intimately know her pain and day to day struggles, are asking you to help with as much as you can. No amount is too small. We need all the help we can get. If you have the ability to do it, please help this little girl improve her life. If it's her speech that improves, or her continuosly painful muscular system, or her ability to sit or stand, it will be an amazing progress.
Please consider our request, and help. A prayer, a positive thought, a "share" on your Facebook page will be greatly apreciated.
[Text written by Ioana Cotfasa ]