Scarlet was born with an extremely rare genetic mutation known as
Schinzel-Giedion syndrome. The condition is complex and involves
epilepsy, kidney disease, severe developmental delay, breathing and
feeding problems, physical abnormalities, impaired motor functioning,
deafness, visual impairment, and abnormal brain growth. Scarlet has no
independent movement and therefor is confined to a wheelchair.
As parents, we have put all of our effort into easing life for our
sweet girl. We have made many financial sacrifices, modified our home,
purchased a wheelchair accessible vehicle, and adapted our entire lives
to bring down the barriers keeping Scarlet from normal life. With that
being said, we are planning a benefit to raise funds to expand our home,
which is split level, or build a new entirely wheelchair accessible
home. It is our greatest wish and desire to create a home around Scarlet
where she can be with her family without restrictions.
Additionally, we had our son Fritz in April of 2012 who was born with
Retino Blastoma or eye cancer. We share this as a side note because we
do not want to appear greedy. I, mom, have been forced to quit my full
time job to care for my children and their full time medical needs. We
could not have been prepared for this life nor were we equipped to
manage it but there is not a second we would change. Our babies are
worth every moment and sacrifice.
A Wonderful Life For Scarlet Benefit will be held on June 2nd at the Mediterranean Cruise Cafe in Burnsville, MN.