Lydia is a bright, funny, beautiful six year old girl, living in
mid-Missouri. She is enjoying her first year in kindergarten and is
writing her name and sharing her knowledge of the Braille system with
her classmates and friends. Lydia is able to share Braille with them
because that is all she knows when it comes to reading.
When Lydia was four months old an Ophthalmologist diagnosed her with
Septo-Optic Dysplasia, informing her parents, Doug and Juli that she
would never be able to see due to the lack of developed optic nerves.
This was a major blow to the first-time parents as they would never have
imagined their baby girl would have to face an adversity they could not
have prevented.
They quickly began researching the diagnosis and searching for a
physician that could help. Lydia participates in various activities and
therapies to assist her with completing daily activities that most
people take for granted. While Lydia adapts in her various environments
and is an extremely happy and smart little girl, her parents still
search for new treatments.
Early this October, Juli received a phone call from her mom regarding an
article her sister-in-law, Kim, pointed out about a new treatment for
patients with Lydia's diagnosis. Juli happened to be shopping at the
time and found the article in the check-out lane. She was overwhelmed
with emotion when she saw the photo of a little girl, navigating with a
cane, much like Lydia and began to read about a new umbilical stem cell
treatment available in China.
When she got home from the store she rushed to her computer to begin
researching the validity of this treatment. Tears streamed down her
face as she read the story of another Missouri family that took their
little girl to China for this treatment.
Juli and Doug were eager to share this promising news with their family,
friends and coworkers. Everyone immediately rallied around them and
began planning fundraising events to get the young family to China and
to assist with medical expenses.
The treatment requires Lydia to live in China for a month while the
umbilical stem cells are administered. In order to promote nerve growth
Lydia will also need Hyperbaric O2 treatments once they return to the
US. Because the treatment is fairly new and still considered to be in a
research phase there will be no reimbursement from health insurance.
This will be an extremely costly treatment, but no one in Lydia's life
is ready to put a price tag on her chance to see her parents faces so
fundraising efforts will be extensive.
Hopefully, in the near future Lydia's Story will have an updated posted
about the first time she is able to see the faces of her proud parents
and the faces of the many people that support the effort of sending her
to China for this life-changing treatment.
1st Update, 12-26-07:
Lydia was accepted into the case study for the treatment January 9th,
2008! As part of the cast study she is eligible to receive five
treatments instead of three and will also receive a small discount in
her expenses. Our many thanks to everyone for your continued support
and contributions. We thank you not just for your financial support but
for the emotional support and thoughtfulness as well. Your kindness,
generosity and well-wishes are making this dream become a reality.
2nd Update, 1-10-08:
After a very long day of traveling yesterday, we have all made it to the hospital in Hangzhou safe and sound. Lydia enjoyed her very first ride in an airplane, we had a lot of fun chewing gum at takeoff and landing. After landing in Shanhai, we temporarily lost our luggage and had the scariest 4+hr bus ride from the airport to Hangzhou. Makes me glad I only have to drive in Columbia!
Lydia was a very brave girl today. The doctors made their rounds and assessed Lydia -shone a light in her eyes, drew blood,etc. She was quite poised throughout the ordeal. I am so proud of my baby girl!
We then decided to get out and explore. We went with an interpreter/escort to the bank to exchange money and go shopping at the Chinese version of Super WalMart. We had a good time browsing at products we never knew existed.
3rd Update, 1-18-08:
I have a lot of ground to cover in this post. First of all, Lydia's fever finally cleared and her back and leg symptoms have dissipated. She had her second stem cell treatment today, it was through IV today so was much easier for her to handle though she still was nervous and scared about the IV. Still brave and not many tears. Kirshner (the program coordinator/titles too numerous to list) arrived today just as Lydia was preparing for her treatment. It was nice to put a face to the voice on th other end of the phone. She was very nice and helped explain the treatment to Lydia which helped her get a handle on what was happening-she is so very inquisitive. She even got to feel the bag of stem cells being infused throught the IV-pretty cool. And I explained to her that they were her "favorite color" yellow. She thought was pretty neat and made it all better.
So the very exciting part of the day came about 3 hours after her treatment today. We were bored and walking around the ward (no mobility or eating restrictions today:) )when we walked over to the Christmas tree that we had investigated before, she said "Oh, now there are lights on the tree!" WOW!! Some blinking lights were on the upper part of the tree (very small tree) and I asked her to look up at them and she had to turn her head away because they were too bright for her. WOW again as she has not been able to see the lights on a Christmas tree before even with the room completely dark and this tree was in full light at the nurse station! Lydia said it all so matter-of-fact that it took me a minute to realize what she had just said. The miracle is happening, folks!! It is definitely a"Thank You God!" time. Also, her pupils are equal and reacting appropriately to light which they have never done. Thank you to everyone who has helped us get here!!
4th Update, 1-25-08:
Lydia has done very well after her last spinal. We made it through the 6 hrs of post-op boredom. She had a slight headache for a couple of hours, otherwise no problems. The procedure seems to wear her out overall and sleeps a bit better for a couple of nights. Her 4th and 5th(final) spinal will be on Monday and Friday of next week.
Today and the next few days a camera crew is around to film what goes on here and interview some patients and families. I spoke with a reporter from the same crew last evening on the phone, she is interested in interviewing Lydia. We will see how it goes.
Todays exciting news: we did a test of Lydia’s vision today using a flashlight a varying points in the room. At one point she was to walk to where she saw the light and another time was to stand still and point to the light. We determined earlier that she was able to consistently perceive light at approx 6 feet in front of her(last time I tried it was about 1 foot in front). We asked her to locate the light at these varying points around the room and she was able to do so with almost 100% accuracy. The only time she didn’t go to the flashlight was when she went to a source of light coming from under the closed heavy curtains that was a stronger light than the flashlight. This was the first time I have had her point to a light and she had a little trouble with hand-eye coordination but did exceptionally well for the first time! Truly amazing!!!
Additional updates available at http://stemcellschina.com/blog/lydia/.
To be a light in Lydia's String of Lights please see our Calendar of Fundraising Events Page for event information.
