Lauren's Hope

There is a child by the name of Lauren who attends Ben's school. She and her parents have become mighty heroes to the parents, teachers, and staff at The Washington Center. Although we have exchanged a few e-mails I have only had the privilege of meeting Lauren and her mom once. In those few moments I knew I had met a beacon of peace and strength in the chaos of being a parent of an exceptional child.

Their story is rather unusual. Lauren was born a completely healthy child. She was active and thriving until the age of two. After a year of exhaustive testing it was discovered that had Sanfilippo Syndrome.

From Lauren's website: Sanfilippo Syndrome is a very rare genetic disorder. Approximately 1 child in 75,000 is born with Sanfilippo Syndrome. In 1963, an Australian scientist named Dr. Sylvester Sanfilippo identified this disease. A child with Sanfilippo Syndrome is born lacking a very important enzyme that is used to break down certain chemicals in the body. If these chemicals are not broken down and disposed of, they will build up causing serious damage. As the disease progresses, multiple complications will arise in the child’s health. Seizure activity, hearing impairment, liver and spleen enlargement, sleeping difficulties, loss of mobility, difficulty in treating common illnesses, problems with swallowing, pneumonia, vomiting, and diarrhea are all common with a Sanfilippo child. Due to the progressive nature of the disease, these children typically only live to reach 10 to 14 years of age.

This morning I found this e-mail waiting for me in my inbox: Andy and I have been up since 1:30am with Lauren running a very high fever. I just couldn't go back to sleep, so I decided to make use of this quiet time.

"Heroes of Hope" partners are compiled of friends, family, Sanfilippo parents, and fellow supporters of Lauren's Hope. It is my passion to see this ministry become an outlet for Sanfilippo families to find hope and security in knowing that the creator of this universe hears our prayers. There are many of you who have personally requested to be added to the ministry and there are those of you whom I have chosen to include because you are already our prayer warriors.... or...... I just felt in my heart that you would be willing to become one.

If you are interested in taking part of this ministry please email me and you will be added to the list: laurenshope@bellsouth.net. In our family's experience, we literally feel the prayers that you offer for our family...as real as the shirt on our back. Words can not express our gratitude!

Many of you have requested a quick update on the condition of our kids. To bring everyone up to speed....Lauren (9 yr. old Sanfilippo daughter) and her 7 yr. old bother have both been suffering with pneumonia for about 2 weeks....Lauren more like 4 weeks. Our son is doing MUCH better and will actually be returning to school on (today). However, Lauren's condition has been more of a roller coaster ride with ups and downs on a daily basis. Our biggest battle with Lauren right now are the high fevers....fevers induce seizures....seizures cause vomiting...the vomiting causes aspiration....aspiration leads to further pneumonia....you get the idea.

Another factor working against her is her poor ability to swallow and move the secretions from her lungs, nose, and throat. This is all just a result of her neurological decline. Her brain just can't get the message to her throat to cough it out of the way. She is on her 3rd round of antibiotics. Just when we think that she appears to be getting better, we have a set back.

Our (mine and Ben's) goal is to spread their message throughout the "blogosphere." Lauren's mom posted most the above at her blog: http://laurenshope.blogspot.com/. I've entered it this way for ease in passing it on to your own readers. I think Cindy would really appreciate hearing from each and every one of you who have supported our family so well. I also encourage her to use that blog as often as possible to tell us about her journey and to have as another avenue of support.