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Welcome to Julia's Web Page. It has been provided to keep people updated about her progress. Julia was born August 22, 1996 to Bernadette and Dorsey Gray. She was diagnosed with Sanfilippo Type A, an incurable storage disorder, in June, 2000. Through a Miracle, we discovered Dr. Joanne Kurtzberg and her wonderful team at Duke through an article in People Magazine.
Julia received an unrelated cord blood transplant on February 2nd, 2001. She is the first child in the world with Sanfilippo Syndrome to receive a cord blood transplant. The hope is that stem cells, rich in the enzyme she is lacking, will reach her brain and stop the progression of this terrible disesase. We now have hope where there was none before.
Thank you for visiting her web page and signing her guestbook.
Journal
Wednesday, January 29, 2003 at 12:41 PM (CST) Happy Belated New Year to All!!
We are doing well here in Atlanta, despite the really frigid temperatures. The low last night was 9 degrees, without the wind-chill. I put Julia on the bus on Friday, and she could barely walk, because she was so bundled up. If anyone has seen the movie “A Christmas Story”, she looked like the little boy in that, it was quite a hoot!
Julia is still doing really well using her owns signs to indicate to us more food or drink when she is at the table. When she is really hungry, there is no doubt what Julia is trying to tell us! We have figured out that she also communicates her desire for food or drink to us by camping out in the kitchen, and opening the cabinets that have self closing hinges. She will open the cabinet, and let it shut enough times to get our attention. It’s pretty funny, and she is very persistent. I just noticed recently that there is one command that she follows regularly. When I am helping her to climb down the stairs, and ask her to watch her feet, she does it every time. This is very exciting to me; she really seems to be picking up the meaning of certain phrases.
Julia decided she missed the Scottish Rite Emergency Room, so we took a trip there last Tuesday night. She lost her balance in the hall in our house. She happened to fall and hit head on the one place on the wall where there is a sharp surface, where some molding meets at a corner of the wall. She required 9 stitches, but was a trooper through it all.
Well, we’re off to Duke this coming Saturday for Julia’s 2-year post transplant studies. Our schedule is as follows:
Saturday 2/1– Arrive in Durham late afternoon. We hope to get over to the Transplant Unit to meet and visit some of our Sanfilippo friends (see list below).
Sunday 2/2 - Hopefully, relax, visit with friends in Raleigh, and celebrate the 2-year anniversary of Julia’s transplant.
Monday 2/3 8:15 AM Check into Children's Health Clinic, 4th floor for height, weight, vital signs
9:00AM MRI Brain. If possible, try to get labs drawn before or just after MRI.
11:00AM Echocardiogram
1:00PM Pulmonary Function Tests
Tuesday 2/4 8:00AM Dr. Escolar for developmental evaluation
Wed 2/5 10:30 AM EEG
1:00PM BAER (hearing test) under sedation
Thurs 2/6 10:30 AM See Dr. Kurtzberg in North Pavilion for discussion of plan.
We’ll head home immediately after meeting with Dr. K.
In the midst of all this, we plan on meeting and spending some time with all of the Sanfilippo families that are currently in some phase of the transplant process. They are:
Andrew Bowman – Those of you that follow Julia’s progress know about Andrew. Andrew was #2 Sanfilippo transplant after Julia. Andrew is about a month older than Julia. Andrew will be in town for just a couple of days for a follow-up MRI after his brain surgery last year. We definitely want together with the Bowman’s while we are there. Ellen and I talk on the phone all of the time, but rarely get to see each other. Andrew’s website address is: www.caringbridge.org/page/andrewshope.
Tommy Bennett – Tommy has become quite a famous boy. The Bennett’s have been featured in a number of news stories, both on TV and in print. The Bennett’s have three children with Sanfilippo, Ciara – 6, Hunter – 4 and Tommy – 3. Tommy was the only one of their children that it was felt would benefit from transplant. Unfortunately, Tommy’s first transplant failed, and he just went through a second transplant last Friday. He seems to being very well right now. Tommy’s website is: www.caringbridge.org/ca/bennettboys.
Jillian Fitzpatrick – Jillian was transplanted in November, and released as an outpatient right after Christmas. Of all the children, Jillian’s progress seems to follow Julia’s. Besides being the only other girl, they were the same age at transplant, and apparently all of the nurses in clinic keep thinking that Jillian is Julia!! We can’t wait to meet her. Jillian’s website is: www.caringbridge.org/oh/jill.
Douglas and Cameron Nicoll – Doug and Cam are brothers, and the youngest Sanfilippo children to go through transplant. Their family gives me true inspiration because both boys were transplanted and in the hospital at the same time. I don’t know how they do it! The boys are adorable, and we can’t to meet them as well. Their website is: www.caringbridge.org/co/nicollbrothers.
That’s all the news for now. Thanks to all for your continued notes of support. Remember, we really love to see your name, if you stop by.
Love to all,
Bernadette
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