Grace is a beautiful little nine year old girl who has been diagnosed with a very rare disease called Sanfilippo Syndrome. Grace is missing a critical enzyme which would normally break down cells in her body. This causes a build up and storage in her system which has progressive and degenerative effects. The doctors say that Grace has an estimated life span of about fifteen to twenty years- some have lived into their thirties. There are similar storage disorders that have been successfully treated with enzyme replacement therapy; thus far this has not been possible for Grace’s type. Research doctors are working feverishly to find a treatment and/or a cure. Our mission is to help fund this research so that Grace and others like her can survive this disease. Grace has special needs; she does not speak or understand language. She has no communication skills. She needs assistance with all of her daily living activities and has to be watched at all times so that she does not put dangerous things in her mouth. Luckily, the state provides financial help to pay for the assistance we require for Grace's daily care. Our helper Jenn has become like another daughter to me and she is absolutely amazing in every way! Grace enjoys the concept of gravity so any time she sees something on a counter – it’s going down! She frequently wears arm braces to discourage her from putting her fingers in her mouth. Doctors say she may eventually lose her ability to walk. We hope this doesn’t happen but we gain peace in knowing that if it did Grace wouldn’t have a problem with it - she is unaware and very easy going. We use a stroller for her at times because otherwise she would run all over the place!! I received a call the other day from the nurse at Grace's school. She told me that Grace fell down laughing but luckily she wasn't hurt. She often laughs so hard that she gets weak in the knees!!! She's having a wonderful life and has taught me the most profound and critical life lessons. I feel Grace has a very important mission and she uses those around her help her to carry it out. It is greatly inspiring and fulfilling to be in her presence.
Thankfully, Grace is unaware of anything other than what is happening right now, in this very moment and lives each day with joy and peace. She does not suffer.
“We should all aspire to be more like Grace who is simple, happy and content. Grace has no fears at all and she doesn’t “WANT” for anything. She is at ease; comfortable in her own skin, and lives 100% in the moment. She has no attachments to “things” and is in love with the basics in life such as food, physical activity, learning time, sleep, play and affection. All (but one) of these things are COMPLETELY FREE!! She loves herself and loves all people regardless of their color, religion, looks, or world views. I think Grace’s purpose is to teach us to slow down and to focus more on what really matters like love, kindness, and compassion. It is the simple things that bring us true joy and we should always be reminded to savor the immense blessings embedded in every precious moment of our lives!!” …Joan (Grace’s Mom)
Grace is here for a reason, let’s learn from her and live for TODAY!!!
|
|
