Letter to our friends and family

Here is a letter we sent out recently to update some of our friends and family about our daughters' health:

Dear family and friends,

We appreciate all of your words of encouragement and your prayers over the past few weeks. You all have been such a blessing to us. In this email, we intend to explain what we have learned about O's health. Feel free to reply with any questions or concerns and we will do our best to answer them.

For all of 2012, we have been asking about O's delayed walking, but it wasn't until she fractured her femur in early October that brought the x-ray that showed the orthopedic surgeon at Children's Mercy an abnormality in her bones. From that we were referred to specialists in endocrine and nephrology. After seeing these specialists and several labs, she was diagnosed with a rare bone disease called hypophosphatasia. We were referred on to Shriner's Hospital in St Louis where we spent the second week of December in their Research Center. They admitted O for a 5 day study on diet and metabolism to see exactly how the disease was affecting her and how we could best help her. We had the best experience we possibly could at Shriner's. Every nurse, doctor, volunteer was there to serve us, love us, and help us. Many of them have been studying this disease from several years and have taught us so much about it.

This is what we know: the outside of her bones are strong but her body is telling nutrients like calcium NOT to go to the inside of the bones, which keeps her bones soft and weak, which in turn have kept her leg muscles weak. Childhood hypophosphatasia is not progressive or fatal. Some of the common symptoms are getting tired easily, losing baby teeth and some pain, similar to growing pains. One of the issues is that her body does not produce the enzyme alkaline phosphate. When Alkaline Phosphate and Calcium combine they help the bone "mineralize" or harden.

Prayer requests:- Complete healing and restoration of her bones- That her body begins producing Alkaline Phosphate- That we would have the wisdom of how to prayer and best help her- That we would not lose sight of God's provision right now during this life change

To our family: Please feel free to forward this on to other family members. We would love for everyone to know what is going on but do not have everyone's email.

Everyone: please continue praying with us. We've included some of our prayer requests.

There is a drug that they are currently using in clinical trials that is making kids bones stronger, but it is only available right now in clinical trials. The team at Shriner's has helped us know how to help O through diet and exercise to help her feel better and get some additional strength until that drug would come available to her. It would be that either she would be added to an new clinical trial or that the drug would become FDA approved and could be prescribed to her. Until then, her bones could be susceptible to more fractures. We will be participating in some physical therapy and aqua therapy through Children's Mercy to help her build up her strength and weight. We also learned from the team at Shriner's that her low weight has most likely been from this disease as well. It is common in children's with hypophosphatasia because instead of calcium being absorbed in the bones, there is too much in the blood, which can cause nausea and/or too much in the urine which can cause burning or irritation. Regulating her calcium will help her want to eat more and will then gain weight more quickly, and encouraging exercise that strengthens her leg muscles will give her the confidence to walk more and more unassisted.

I guess that is all for now. Thank you for your prayers. We are full of hope. We trust that God is already at work in her body.

Love,Robert and Susan

With the knowledge we have learned from the team of specialists at Shriners, it has answered so many of the questions that we have had over the last year. She is already eating so differently.