🏃♂️ Help Us Make a Difference with Legs4Lindsey! 🌟
Dear Participants,
As we gear up for the Annual National MPS Society 5K Run & 1 Mile Walk, we invite you to join us in supporting a cause close to our hearts: Legs4Lindsey. This year marks Lindsey's 5th anniversary, and we're rallying together to make it special.
Lindsey was born perfectly healthy, so we thought. However, when she didn't progress in skills
as a toddler we became concerned. Lindsey was actually born with MPS-IIIa (Sanfilippo
Syndrome MPS) because it is genetic. LuLu is missing the enzyme Heparan Sulfate that
recycles brain cells.
Lindsey was born and developed "normally". At age 2, Lindsey was not talking like a two year
old should be. She was playing and developing socially, her fine & gross motor skills, etc. She
could feed herself, walk/run outside with her sister Hannah, play games, etc. Lindsey seemed
just like a normal toddler. She put puzzles together, sang, was very smart actually. However at
times, she seemed different...unique actually. So at age 3, we had Lindsey tested for genetic
syndromes. We were thrilled to be told Lindsey was just developmentally delayed. We started
her at the "famous" West Main PreK School here in Albemarle - we cherish our years there.
At age 4, Lindsey had already lost her small vocabulary and was still walking on her tip toes.
She seemed perfectly fine, but different at the same time. She was fitted for braces, which
helped her walk for a while. We had her tested again that summer; unfortunately, the results
were devastating. We had to learn about life as an MPS family. We did and were learning how
to live FOR the future. By age five, Lindsey had lost her physical abilities so we bought some
equipment to use for her. We had equipment for strolling, beaching, bike riding and feeding
Lindsey...all which made life much happier for all of us.
Lindsey had normal milestones, could climb in/out of bed, sing, feed herself, help do things, be
playful, etc. By age 5-6 everything, talking, eating, walking, standing, sitting up, was gone.
Lindsey NEVER gave up though. She was still full of life every single day! Lindsey didn't let
MPS get the better of her. We'll never forget her precious belly laugh & how Lindsey jiggled all
over! As of Spring 2009, 5 years after Lindsey's little life sank into despair, she is considered
medically fragile, severely handicapped and terminally ill. Thanks to the Grace of God Lindsey is
here…beautiful, smelling heavenly, and still responding to our voices so that is wonderful. We
will enjoy life with Lindsey for as long as God allows.
She passed away on June 1, 2019 peacefully in her home. She fought a good fight and made it
21 years strong! She was the definition of a fighter, saint from God and a believer!
She is missed so much everyday but she is running in Heaven happily and healthy!
Mucopolysaccharidoses (MPS) is through an organization called The National MPS Society.
This organization raises money to The National MPS Society and its members raise money
to provide student fellowships and fund research projects. Their mission is to serve individuals,
families and friends affected of MPS or ML.
The National MPS Society holds an annual Raleigh Run for Rare on March 23 to help raise
money for this cause. Since this is Lindsey's 5th anniversary of her passing we wanted to host a
run for her that everyone could be apart of!
