This is our story.
I gave birth to a beautiful 8 pound perfectly normal baby boy named Brian Lawson Lee on August 2, 2007. Everything in our lives seems to be just as we had dreamed! The next four months were just what I anticipated motherhood to be. We had formula issues from day one, but on the whole things seemed normal. As New Parents we lacked sleep, but it was so worth that precious bundle of joy God had blessed us with. On Christmas Eve Lawson was sick for the first time, an ear infection. He had one ear infection after another until his first Birthday. I think we had 26 medication receipts for our taxes that year!
When he turned one tubes were the answer to our prayers. As I began to watch the other babies eating whole food, crawling, and then walking, I noticed Lawson seemed delayed. He did the army crawl forever (he walked at 18 months). I think he ate yogurt till he was 3! He did not care for all the new wonderful foods I was offering him. By the time he turned two he was not talking like our other little friends. We started speech therapy during our two year old year. Our therapist on day one said, "He is low tone right?" I made an appointment that following week with our pediatrician and asked to have him see a specialist.
We started with Neurology, Genetics and then our big trip to Duke. All ruled that Lawson was just developmentally delayed. Our Genetic report came back with two results 15q 13.3 and 2q22.1. I know that seems foreign to some of you. The results just seemed to stay in a folder at Children's Hospital Kings Daughters for some time. I think after we visited Duke and were told Lawson was not Autistic, I just accepted he was developmentally delayed. We continued with speech, physical and occupational therapy until March of 2012.
This is my post from Facebook March 6, 2012
Holding my baby tonight. This morning as I got ready for work Lawson stopped breathing, after a 911 call I gave him rescue breaths until the EMT's arrived. He was taken to the OBX hospital, it was a seizure. He was then taken to CHKD. Tests will be taken tomorrow to see why this happened. Lawson is exhausted and whiney...but has never sounded so good. God spared us once again! More to come tomorrow after tests.
That morning I found him lifeless. He was not breathing, eyes rolled back in his head and foaming from the mouth. I think that is the day our lives truly changed. We had a weeklong stay in the hospital. During our stay our Doctors came to give us the news. In that Genetic file laid the answer to many of my questions. Why so many ear aches? Why does he have a speech delay? Why is he low tone? Why does he have eating issues? Why is he delayed? We were told that our son has Chromosome 15q duplication.
Since that day in the hospital Lawson has taken more medication than I would ever want to take as an adult. He takes two different types of seizure medications; adult doses each, 3 times per day. I don't think there has been a month we have not visited a Doctor in the last 22 months.
In my desperate search for more information on Lawson's duplicated chromosome, a door has opened for us to take him to the 15q clinic in Boston, Mass. I have prayed for the last two months that God would lead us. I was reminded in church Sunday, that in all circumstances he goes before us, behind us and in the midst of whatever we are involved in. This week confirmed that. I have heard nothing but wonderful reports on how beneficial this will be for us! Our hope is to learn more about new medications, diets and types of therapy essential for 15q kids. The Doctors at Kings Daughter recommend this clinic for our son.
We will need to raise the funds to go to Boston during the week of April 14-18, 2014. I have no doubt that with God in control it will all come together!
My husband, Daniel and I thank you for your support and prayers.
Shon B. Lee
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