Support, Research and Advocacy for Rare and Special Families

MWS Stories

South Africa > Janke-Juane

© Mowat-Wilson Syndrome Foundation

© Mowat-Wilson Syndrome Foundation

Janke-Juane` Cloete

Was born at 6 months 7 days at emergency cesarean. She was placed directly into neonatal ICU from birth date 26 Feb 2009 till 26 April 2009 when she finally came home (on our wedding anniversary).

At 5 days she had an emergency operation to clear her colon of all stools and to do a biopsy on Hirschsprung disease. The results came back the same day and two days later they did her colostomy. Both operations were successful. She battled with her breathing up to 5 days before coming home. They did a colostomy closure at 6 months after removing 75% of the colon. After the colostomy closure we battled with burned bum and still sometimes do but the severity is now to the minimum.

Her CT scan was extremely poor as they said she will not be able to accomplish much as the severity of her brain damage is very high. But like I mostly do (I do not believe everything the dr says and always have to proof them wrong – even if it is 1 %!) so today my little girl can crawl, sit by herself, feed herself using her hands, dances while standing, climbs off her bed and the couch, chats constantly, takes her nappy off when she needs a change , listens, understands 2 languages, swims, tries to bath herself, takes off her special boots, rubs cream on her arms and tummy, drinks on her own.

She is a buzzing bee 24/7 and always laughs out loud. To date we have not experienced and seizures and pray not to. We have been so blessed and we do as much as possible to improve everything we can – and what the doctors assume we won’t be able to. I google once a week on MWS to look up for any new findings. I read up on all stories and try new things – but not medication. We prayed for her heart and to date she only used medication for her heart in the hospital. The flushing sound in her chest gets less monthly and every check up goes better than the previous.

Only thing is when she gets the flu she tends to dehydrate extremely fast but that also improves every time.

Till next time for a more detailed update on our little angel…… may you all be blessed and now that every single little and big one blessed with MWS is in our daily prayers and thoughts.

Nadia and Jaco Cloete

Proud mommy and daddy of Lolla age 3 (Janke-Juane` MWS) and Tammy age 10 (sclerosis, maligne hyperthermia, Arthrogryposismultiplex due to muscular dystrophy

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