Although most days I feel consumed by all that Cystinosis has brought my family, tonight I feel JOY...I feel HOPE...I feel like a DIFFERENCE is being made!

Six years ago our daughter received a death sentence. Watching her endure one physical battle after another has been a painful experience. After one month of grueling tests in a hospital 320 miles away from home Tina was diagnosed with Cystinosis. We were sent home with 33 doses of medications and told that our daughter would eventually succumb to a disease that would slowly destroy every organ in her body. There are no words to describe the grief and sorrow that come from being told "your child has a terminal illness".

At that point in time, the only hope I had was getting through one more day. Medications were given around the clock 24/7. Tina was on a feeding pump day and night. There was all day and all night vomiting. She was too weak to move. She was diagnosed with anorexia, failure to thrive, and rickets. Just keeping up with Tina's massive water intake and constant urination was difficult. Keeping Tina dry at night is still a challenge. We still get up 2-3 times nightly to change bedding, as Tina will easily drink two gallons of water a day. I remember administering her medications and crying at the same time, because the same medication that was supposed to be helping her was also harming her, with it's ongoing list of side effects.

That was then, this is now...FAST FORWARD to today. After years of hoping and praying, a breakthrough finally came in the form of a new medication called RP103, which replaced the old unpalatable Cystagon. Tina got accepted into the FDA trial administered by Raptor Pharmaceuticals in August. She made the required weight by one ounce. That day was one of the happiest days of my life!

It did come with a cost - most of Winter has been spent traveling back and forth to Stanford Medical from our home in Washington. Airline travel is difficult with all the medications, excessive thirst and urination, among other things. It was one of the most difficult things we've had to experience---the long days of travel, being away from home, missing half the school year, not to mention the rigorous schedules, testing and blood draws. But it was SO worth it! The new medication has freed Tina from a life of vomiting, she no longer takes medication at school, and we have discontinued her stomach meds. The most exciting part is she can FINALLY sleep through the night after six years. No more 3 a.m. medications.

The RP103 was funded by the CRF. Each of YOU has made a difference and continues to make a difference in the lives of all those with Cystinosis, as well as other diseases like Huntington's, Batten's, Parkinson's, and Fatty Liver Disease. I joined the CRF board last October, and I am continually amazed with all that is happening in the way of new treatments and a cure. I know one day Tina will look up to each of YOU, thankful that YOU have helped her fulfill her dream of being a mommy.

Although Tina is thriving, the reality is that she is slowly deteriorating with each passing day. She knows she is sick. She has shared with us that she only wants to be like other children. To date, Tina has taken 46,895 syringes of liquid medication and 57,488 pills just to stay alive. Amazingly, Tina rarely, if ever, complains.

Recently, Tina had surgery to close her gastronomy tube site. Her potassium levels got so low they called a Code Blue and we nearly lost her. These children are so fragile. They linger between life and death. We know that God has something big in store for Tina. Her journey has only just begun!

Tina has a multitude of health issues. Our latest challenge is dealing with Tina's eyes. As she grows, the crystals in her eyes change shape and become like shards of glass. The crystals function as a prism, reflecting light. This is very painful. Tina rubs her eyes and says it feels like she has sand in them. The only treatment available are eye drops that are hard to comply with?they must be administered every waking hour, remain refrigerated, and are not FDA approved, so they are hard to obtain and expensive. Tina will need to take the eye drops for the rest of her life or she will go blind. The CRF is funding research for new eye treatments. That can not come soon enough!

Having a child with a terminal illness brings unimaginable heartache. It hasn't been easy, but YOUR past, present and future support of Cystinosis research gives us the hope we need to get through just one more day. None of this would be made possible without your commitment, and the commitment of the researchers, doctors and so many others who support the CRF.
 
It wasn't until we came into contact with the Stack family and the CRF that we felt hopeful in this terrible fight to save our daughter. I'll never forget Nancy's words, "I will go to my grave finding a cure for Tina, Natalie, and all those with Cystinosis". Believe me, she WILL find a cure, but she needs YOUR help!

Our entire family thanks each of YOU for letting us have a little piece of heaven every day when we look into this little angel's eyes. We know that one day Tina WILL be cured!!