Hypo what? Hypophosphatasia is a rare metabolic bone disorder, and our daughter Sera has it! This past January she began an Enzyme replacement therapy research study through Shriners Hospital in St. Louis
I am thankful that Sera wants to willingly help others out even though all of the tests they have to do are not the easiest. She is a hero!
This picture was from their last visit in January. Jared and Sera got to do a lot of sight seeing!
One of the characteristics of child onset Hypophosphatasia is early loss of baby teeth. She lost her first tooth when she was 23 months, and has lost a total of 12 teeth so far. She has a partial for her bottom teeth as she only has her two bottom molars left. Here she is visiting the childrens' Dentist specialist in St. Louis.
I'm thankful for a competent husband who has been able to go and be with Sera the last 3 trips down to St. Louis. The next visit Eliza, Sera and I will be going since it will only be a 2 day visit. Jared and Sera have been down there all this week.
One of the many times she has to get her blood drawn.
Her first visit back in November they had to have her on a special diet to see how her body responded to calcium intake.
I am thankful that they have on-site tutors to help the patients with their school work. She loves her teacher!
13 comments:
I'm not sure how I found your blog... but i just wanted to wish you and your little girl my best wishes as she goes through her treatment. Thanks for sharing.
PS I love the video of your little girl with the rice krispie ... classic 21st Birthday material!
She is the best little girl! She definitely has the personality to be able to endure everything she is, or will be going through. Giver her a HUGE hug from Aunt Wendy, I love her:-)
What a hard thing to see your daughter go through. She is a cutie and I love that she can smile even through the difficult things she is going through. She could teach a lot of us adults by her example! I hope the therapy goes well.
She IS a hero, and an adorable one at that. We love her! (And, really, I know my 7 year old would NOT tolerate even one blood draw, she is amazing.)
Sera is such a trooper. She has your facial expressions Pam! This makes my heart surgery seem like a walk in the park. She is my hero too!
I know you are so so positive about this and Sera is AMAZING about it all, but I am all teary-eyed and sad to think about all she (and her parents) are going through with this. She is in my prayers that it can be all figured out soon and she won't have anything more serious than losing teeth. Love you guys!
What a happy girl despite her challenges. Thanks for sharing, hopefully you can keep updating us about her progress.
PS-Marisa Hartman is my visiting teacher and my husband grew up with Brent. What a small world!
I totally agree that I am a city/suburb girl! I miss the luxuries of a bigger city, but I am grateful we have a job and a slow pace to life right now!
You're not kidding. She is a hero.
Oh my gosh! That poor thing! But, look at her smiling and being such a trooper! I sure hope there is some cure or something the doctors can do for her...
I want you to know, I'm 21 and I have been diagnosed with hypophosphatasia since I was 2 or 3. I have went through all of the blood draws and xrays and loosing the teeth. They offered me braces at 12, but said it would take so long to straighten my teeth that I would have them at least 10 years. Safe to say, I didn't get them. Been going to the Arkansas Children's Hospital ever since I can remember. If you need anything, don't hesitate to contact me. mhickerson6@gmail.com
I just ran accross you blog! I to have HPP (hypophosphatasia) since I was 3 months old I'm 50 now. I have had over 80 fractures in my life and 26 rodding surgeries. I wish you little girl the best on the new Enzyme replacement therapy. I just sent Dr Whyte 9 tubes of my blood for research for the enzyme research program. I have the most severe case of HPP he has seen that has survived. I live in Southern AZ (born in IL) if you ever need to talk don't hesitate to contact me softbonesnrods@gmail.com
Sue K
I have a three year old who is suspected of having hypophosphatasia and we are going through the diagnosis process with doctors and dentists who seem anxious to help but have little experience. I would love to connect with a mother who has a child with this to help gain perspective. jpavelecky@aol.com
I found your blog through the internet. We just found out my 4 year old daughter has been diagnosed with hypophosphatasia. I would really like to talk to someone who is/has gone through the same emotions that me and my husband are going through now. My email is thebogies@msn.com.
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