Welcome Friends!
Michaela M.
Birthdate - August 25, 1997
Main Diagnosis - mucopolysaccharidosis IIIA
THEME: Pink, Cherished teddies
Biography
Miss Emily's story Michaela was born a normal healthy child in the Summer of 1997. She
met her milestones appropriately, and never gave us any reason to think that
there was something wrong. In fact, she was a very bright and talented toddler,
amazing us with her musical and artistic abilities.
But around her third birthday, we started noticing some physical deficits. She
had a difficult time with walking off a curb and navigating stairs. Other
children her age were jumping off these ledges or bounding up stairs, and she
would only stand at them and judge the movements before taking a step.
Shortly thereafter, she had her first of many, many seizures. It was a grand mal
that lasted at least 3 minutes.
Despite medication, the seizures wouldn't stop. We tried drug after drug after
drug, to no avail. Her development started to decline, and as she grew older,
she was not keeping up with her peers in any area. The regression would wax and
wane with seizure control, but she never seemed to get past the point she was
when the seizures started. To this day, at age 13, Michaela is still
developmentally similar to a 3 year old.
After a crisis at the beginning of 2005 that left her unable to eat by mouth,
walk, talk, or play, she was officially diagnosed with epileptic encephalopathy,
which was later further defined as Lennox-Gastaut Syndrome. LGS is one of the
rarest and most devastating forms of epilepsy, affecting only 4% of children
diagnosed with seizures.
Eventually, through therapy and constantly shifting drugs, she regained all of
her lost skills. She even had a glorious 4 years of relative stability, only
having to increase the meds as she grew. However, these crises have resumed, and
come more often now, debilitating her once again. Due to this state of flux, she
has a g-tube, a wheelchair, and a hospital bed to help her stay comfortable and
improve her quality of life during the seizures.
Over the past 8 months specifically, Michaela has been hospitalized more than in
her entire life, including a 3.5 month long stint during the fall and winter.
Due to adolescence, her seizures will now cluster together so much that she
needs strong medical intervention, but that intervention seems to throw her
brain into a persistent psychiatric condition. Finding the balance between the
two extremes has been a very difficult task for her medical team.
Meanwhile, other bodily systems are affected by the strong meds or damaged brain
activity, and further complicate her already fragile medical state. Keeping
Michaela healthy enough to enjoy life has been the main goal, but is a constant struggle.
Despite her declining health, Michaela is a happy child and very loving. She has
never met a stranger. She constantly makes us smile and warms our hearts. She
enjoys school, her teachers and fellow classmates very much. She also especially
loves to be in church, and loves to sing as much as she can when she's able to
go. We are grateful that in the midst of her struggles, Michaela is not very
aware of her medical condition, and enjoys life as much and with a carefree
attitude....like any 3 year old would!
When you sign up to stitch for Love Quilts you will get a confirmation of your sign up. If your pattern is a duplicate you will be asked to pick another pattern.
We encourage you to join the LoveQuiltsUSA Yahoo group to check the pattern listing for duplications yourself before you sign up.
The lists of patterns already being stitched are posted on the database. LoveQuiltsUSA is an open group so you can sign up easily and view the patterns right away. Please follow this link to sign into the Love Quilts Yahoo Group...
Once there click on the link "database" on the right to view the children and their patterns. Once you find a pattern that you want to stitch and have confirmed it is not already being stitched you may return to the sign up form, fill it in and submit it. If you have any questions about the yahoo group please email Cyberfogie@aol.com, Vicki, for further instructions (yahoo groups email only!) Thanks!
Squares donated by Operation Teddy Bear
"Thank You"
We got the package in the mail yesterday, on our way out the door to Children's Hospital for yet another admission. When we finally got settled in our room, I opened the box and gasped...
This quilt is BEAUTIFUL! And just perfect for Michaela!
We could never thank you all enough for all the time, love, and support stitched into this quilt. It's a treasure. An absolute treasure. And now we have it with us as a comfort on this long journey.
Thank you...from the bottom of our hearts.
Chris and Kelly Morris
