Meet 10 Year Old Kylee Postel Who Suffers from Mitochondrial Disease Complex 3 & 4
"Kylee was born June 18 2003. From the moment she was born we knew something was wrong. She was born with a Ptosis (droopy eye lid) and severe GERD. At 3 weeks old she was diagnosed with having seizures. Thankfully after having 30 of them they disappeared. Kylee continued to have severe vomiting issues and was FTT. Kylee was also has developmental delayed. She had many diagnoses including CP. Kylee had her first of many surgeries at the age of 1. She had ear tubes put in. At age of 23 months she had a Toupet Fundo and G tube placement."
"In 2008 it was brought to my attention to look into Mitochondrial disease. Kylee had a MtDNA..which came out normal. Next step was to do a muscle biopsy. Kylee's Electron trans Chain (I believe that's what's it called) were abnormal. This showed she had defeats in complex III and IV. This is the day our lives changed forever... Kylee had Mitochondrial Disease."
"To this day Kylee has had 20 surgeries and countless medical procedures. The biggest surgeries are FUNDO, G Tube placement, Ptosis, Pylorplasty, muscle biopsy, Roux En y, Port A Cath, MACE, Ileostomy, and Ileostomy revision. Kylee has a G Tube for medication and venting. Separate J tube for nutrition. Port for IV fluids 7 nights a week, and an Ostomy."
"The last 2 years Kylee has been inpatient every 4-8 weeks for bowel clean outs. Just this year Kylee has been inpatient every month for 3-4 weeks stay because her colon just didn't work. In February we tried the MACE which ended up in failure. Kylee was still ending up inpatient. Kylee had a barium enema which showed she had a Megacolon. The decision was made to go ahead and do the ileostomy. She has had a few complications but overall glad we did it. July 11-12 Kylee had a Manometry testing done. Thankfully her stomach and small bowel are working ok (not great, but working). Unfortunately her colon does not. She has nerves but the signals don't work. Really the doctors have no hope that her colon will ever work..since 2 years ago she had the same test and was normal, but right now the plan is..repeat test in 1 year. If colon is better we can reconnect again. If still the same we will do a Colectomy. Thank you for reading her story."
- Kris Postel
To follow Kylee in her fight against Mitochondrial Disease Please visit her Facebook Page at https://www.facebook.com/HopeForKylee
"In 2008 it was brought to my attention to look into Mitochondrial disease. Kylee had a MtDNA..which came out normal. Next step was to do a muscle biopsy. Kylee's Electron trans Chain (I believe that's what's it called) were abnormal. This showed she had defeats in complex III and IV. This is the day our lives changed forever... Kylee had Mitochondrial Disease."
"To this day Kylee has had 20 surgeries and countless medical procedures. The biggest surgeries are FUNDO, G Tube placement, Ptosis, Pylorplasty, muscle biopsy, Roux En y, Port A Cath, MACE, Ileostomy, and Ileostomy revision. Kylee has a G Tube for medication and venting. Separate J tube for nutrition. Port for IV fluids 7 nights a week, and an Ostomy."
"The last 2 years Kylee has been inpatient every 4-8 weeks for bowel clean outs. Just this year Kylee has been inpatient every month for 3-4 weeks stay because her colon just didn't work. In February we tried the MACE which ended up in failure. Kylee was still ending up inpatient. Kylee had a barium enema which showed she had a Megacolon. The decision was made to go ahead and do the ileostomy. She has had a few complications but overall glad we did it. July 11-12 Kylee had a Manometry testing done. Thankfully her stomach and small bowel are working ok (not great, but working). Unfortunately her colon does not. She has nerves but the signals don't work. Really the doctors have no hope that her colon will ever work..since 2 years ago she had the same test and was normal, but right now the plan is..repeat test in 1 year. If colon is better we can reconnect again. If still the same we will do a Colectomy. Thank you for reading her story."
- Kris Postel
To follow Kylee in her fight against Mitochondrial Disease Please visit her Facebook Page at https://www.facebook.com/HopeForKylee
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