Jordan S. - Quilt Finished in 2006

Born: July 4, 1997

Illness: Multiple Epiphyseal Dysplasia

A Thank you from Jordan's Family!

Written May 15, 2006

All I can truly say is it's UNBELIEVABLE!  You should have seen the look on his face when we opened the box.  It is absolutely beautiful.  We can never say enough thank-you's or tell you how much this means to us.  When I can I will have his Grandma take a picture with him and the quilt and we will send it to you.  Again Thank you ever so much.  Mardi & Jordan H.

Jordan S.'s Story

written by mom Mardi

Jordan was born July 4th, 1997 weighing 8lbs 3oz. and 17 inches long. The doctor had some concerns with his length from the beginning. They thought he was going to be a Dwarf, but being that dad was only 5ft.4in and everything else was normal, that thought was quickly forgotten.

Jordan seemed to grow and progress as any other child (first tooth, first words, first steps, etc...) When he began to walk, is when we noticed that there maybe something going on, but according to his first 2 doctors his hip rotation and leg flexion were all normal. They monitored him a lot.

When he was about 3½ years old, we went to visit relatives in Utah and my aunt who is a Diagnosis x-ray Technician, questioned "Why does Jordan waddle?" I just said "I never really noticed it" but she insisted that it was not normal and gave me a list of things to have checked out when we got home. Well, I called and got an appointment with our new family doctor. He went over the list, did a complete exam on Jordan, sent us for some blood work and x-rays and told us he would be in touch when he got results back.

He called 2 long days later with the news that it wasn’t Dwarfism that affected Jordan but that he had some definite serious concerns with Jordan. In June of 2001 we had our first appointment with the surgeon who informed us that Jordan has Multiple Epiphyseal Dysplasia (or Skeletal Dysplasia) because it can affect the whole entire skeleton. He explained that the condition was serious and if it hadn’t been diagnosed when he was, Jordan would have been in a wheelchair by age 5 for life.

The doctor sent all of Jordan’s records to Shrines Hospital in Texas for other doctors to look at and help him come up with a plan. One month later the doctor contacted us and we went back in to talk about treatments and such. In the first part of November 2001, Jordan had his first of three to-date surgeries. These surgeries are very life-threatening and Jordan had three of them so far. Recovery of these surgeries takes up to 8 weeks and he was put into a 50lb. cast from his armpits to his ankles.

Jordan is in a daily battle with lots of pain. He is not allowed to jump and he has to watch how much he runs (which isn’t much at all) and still doesn’t have full motion of his hips or legs. This disease is very life altering and body altering. This disease has left Jordan with almost 10 inch height deficit for a normal 7 year old. He well never ever be able to play any contact sports. He well always have a very hard time running and playing and just keeping up with his friends.

Written by Jordan's mom Mardi in June 2005