Welcome Friends!
Olivia S.
Virgina
Birth Date - April 13, 2006
Main Diagnosis - Mitochondrial Myopathy w/ Complex 3 Defiency
THEME: Flowers
Biography
Olivia "Lily" was a beautiful baby at birth. She was our third child and we had greatly anticipated her arrival. However she started experiencing health issues shortly after delivery. She had trouble regulating her body temperature and was required to stay under the warming lights almost constantly. She developed severe jaundice as well as feeding difficulties. At 3 days of life, we were finally able to take our baby girl home but had very close follow up as she had lost a significant amount of weight and had already developed what would become severe GERD. Her feeding difficulties continued and by the time she was 5mo old we were on our 3rd medication for reflux and she had been diagnosed as FTT and as having both a milk protein allergy and soy allergy. As she got older, we added more and more diagnoses, more medications, and more specialists. By the end of her 1st year of life we were seeing 8 specialists and on more meds than we could count. No one knew what was wrong with our baby. She wasn't growing, wasn't progressing w/ her milestones, and was constantly sick.
Finally at the age of 2 1/2 we got our answer, Mitochondrial Myopathy w/ a Complex 3 Deficency. We were told that her future was unknown but that her chances weren't good. Our local genetics doctor told us that she could not treat our child, she was too complicated- so we traveled over 500mi to Atlanta to see one of the few specialists in on the East Coast. There we were given the sad news that there was no "cure" for our child. We were given a list of 23 symptoms to watch and wait for as well as the Mitococktail, the only known treatment. We were sent home to wait and see which symptoms our child would develop and how quickly her disease would progress.
Currently Lily is a happy, spunky 5y/o little girl who doesn't let things like her diagnosis stop her. We just got back from our most recent trip to Atlanta were we got the news that unfortunately Lily will require a G-tube since she has significant Gastroparesis, GERD and now is developing oral aversion towards both liquids and solids. She has been hospitalized multiple times this year due to dehydration and illnesses. However, despite all of these set backs she started Kindergarten on time with her sisters. We try our hardest to give her as normal a life as possible. She has been through so much in her short life but yet she continues to smile.
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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!
