The goal for the organization is to raise $25,000 this month, and our family is hoping to raise $3000 towards that goal and in honor of Grace's 22nd birthday.
September is International HH Awareness Month and we are dedicated to making sure more and more people are aware of this ultra-rare syndrome.
Our Grace lived with not only this rare brain tumor but all the other conditions it caused.
- Gelastic seizures, absence seizures, complex partial seizures
- Hyperphagia (Acquired Prader-Willi Syndrome)
- Hypothalamic obesity
- Precocious puberty
- Diabetes insipidous
- Hypothalamic rages
- Hypothyroidism
- Anxiety and other neuro-psychological disorders
After nearly 8 years of a courageous battle with a hypothalamic hamartoma, Grace passed away unexpectedly on December 11, 2011. Grace brought joy to the lives of those who loved her with her gentle smile and loving personality. Gracie loved going to school, making jewelry, doing puzzles and taking care of her baby dolls. She was a great big sister and simply wanted to make sure her sister and brother were happy every day. We were blessed to have her in our lives.
Every dollar donated makes an impact, so please consider making a donation today in memory of Grace and to improve the lives of others with this syndrome.
#Remembering Grace
#StrongerTogether #HHAwareness #ChooseHOPE #FightingForRare
