US Tax Deductible EIN: 26-0256621
- (562) 212-1071
- 2409 E. Luke Avenue Phoenix AZ 85016
Mallory Rayne Salazar is a ray of light that came to us one rainy Saturday afternoon. She was born on July 14, 2007 and was 7lbs. 8oz. of pure perfection. From the first time I laid eyes on her, I knew there was something "special" about her. Little did we know just how much she would teach us.
Mallory's development was a little delayed her first year, but it wasn't anything that the doctors were too concerned about. We attributed it to the fact that she was our baby, and her brother, Matthew, and sister, Madelyn, carried her around and did everything for her. Even at daycare, she was the favorite and was always in someone's arms. The evening after her two year check up, we noticed a rapid eye movement (nystagmus), and thought it was happening because a little girl in the waiting room had walked up to her and poked her in the eye. We took her back to the pediatrician on Monday and he said it was probably nothing to worry about, but he wanted us to have her seen by an ophthalmologist and a neurologist.
The appointment with the ophthalmologist was basically a waste of time because he had very little patience with her and did not do a thorough exam. He should have been able to see the cherry red spot in her eye, but he didn't. He told us to bring her back when she would be able to cooperate. After seeing the neurologist, he sent us over to the hospital to get some labs drawn, and a CT scan of her brain. They said that the CT scan was normal, but her labs were all out of whack and her liver enzymes were very elevated. This was the beginning of a nine month journey to find out what was wrong. Originally they told us that she had a rare form of cancer, and that a tumor was going to surface on her spine. The neurologist sent us to a hematologist who began running test after test on her. All the tests came back negative, and all the scans they were doing on her every few weeks showed nothing, yet Mallory was becoming physically weaker and began to have trouble walking and swallowing.
After taking Mallory to Illinois to be seen by a specialist for this rare form of cancer that she supposedly had, the specialist recommended that her doctors here in Texas test her for storage diseases. About a week after they drew Mallory's blood, they called Joe and me in to have our blood drawn. On March 17, 2010, we received a call that finally gave us the answer we had been looking for all these many months-Tay-Sachs disease!! After learning what it was, we just wanted it to go away. The doctor told us there was no treatment or cure and that the only thing for us to do would be to take her home, love her and give her the best life we could for the couple of years that we would have her.
Fast forward nine years and Mallory is now 11 1/2 years old! She has taught us so much and is fighting Tay-Sachs with every single bit of her being. We have been blessed with so many wonderful people that love and care for her and we are all learning how to help Mallory fight this disease together. We are so excited about all of the recent advances in research to find a cure for this awful disease, and we look forward to the day that no child will have to suffer from Tay-Sachs disease.
User Name *
The Cure Tay-Sachs Foundation is very grateful you decided to donate and we thank you for your generosity. Your donation will be used to support research to find a cure for Tay-Sachs disease.
The Cure Tay-Sachs Foundation is exempt under Section 501(c)(3) of the Internal Revenue Code, making this gift tax deductible to the fullest extend permitted by law.
Please click the PayPal button to make a donation today! You can donate using a credit card - without a paypal account - by following the instruction on the paypal system (lower left). Or, if you prefer, please send your donation (payable to the Cure Tay-Sachs Foundation) to the address below.