Three years ago, this rare form of muscular dystrophy knocked on our door once again; the same genetic disorder that had affected Casey's dad was about to begin its journey of ripping a future from yet another member of our family.
Casey puts on a great face... and continues to find laughter and a positive attitude... and she fools everyone... but us...
Like other charities, we are raising money to develop an awareness of the travesty and pain muscular dystrophy brings to the affected, and the family as well.
We are also asking for your support because we do not have the personal fortunes to find a treatment and possibly a cure for Casey's rare form: Hereditary Myopathy with Early Respiratory Failure- HMERF.
We ask for your support of any size. Whether you can give $10 or $10,000, each dollar gets us closer to Casey getting to the researchers who are waiting for her tissues.
That may sound odd, but when I began this quest, as her mother, to say there were skeptics would be an understatement. As divine intervention would have it, we have family members deeply involved in the medical research community who were able to find us THREE researchers who have been looking for a candidate who might benefit from their 25-year study of the TTN gene, which is where Casey's gene dwells.
The researchers are ready, the science is ready.. and now all we need is the money that can keep Casey on her feet and continuing her own personal devotion to helping her own patients have their own best quality of life.
Please give now... so we may reach our goal before the end of the year and put the researchers to work first thing in 2021.
We thank you from the very bottom of our hearts and which you all to stay safe in this difficult time.
PLEASE share and follow far and wide... many chips fill a large bucket... 💞