Welcome to Julianna's webpage. In January 2007, Julianna a rare metabolic disorder causes to have degeneratio of the central nervous system called Mitochondrial Disease, Now in 2009 they are saying she must have a genetic disorder also. New testing has begun. Suspected metabolic disorder as of 5/2009. Julianna is part of palliavate care at her hospital. Jesus 2020: Video (copy and paste to view) Jesus 2020: Video
I was born on December 7, 04. I can not eat solid foods, walk, crawl, roll, talk, see or sit alone. I was born, a full term baby. I was sent home with mommy and daddy, at the time doctors said no problems. A few days later I sounded stuffy. Went to the Dr. nothing. Went to the ER nothing. Finally around 4 months old I got the chicken pox's. Let's not forget the rash on the left side of my face that took forever to go away. So mommy and daddy began asking around but no one was concerned. We moved to NJ and was told that a little early intervention would not hurt. I was just a girl and needed a little exercise. We went to see a dev. peds. who said I had more going on than just a little girlishness. Then I went to Neurologists. They said they couldn't find anything. Then I went to an eye Dr. who said I had Cortical Blindness. Then I went to Boston Children's to be tested.Yup cortical blindness/optic atrophy. Then we heard about a hospital called CHOP they sent a package full of papers. Daddy received the letter saying that they would call us in March of 2006 for an appt in June 2006 with there Dev. Peds. This letter came in 2005. No way said my parents. Meanwhile we went to see a genetic Dr. at St. Chris. Who also sent us to CHOP. We called every department. Spent hours telling anyone who would listen about me...finally an apt with an orthopedist at CHOP October 2005. Then I saw a phsiatrist who said I have axial damage. Met with the genetic doctor who, called in the neurologist Jan. 2006..I was hospitalised for a UTI. That referred us to feeding and swallowing. Went to a metabolic doctor. My new MRI shows lipoma and softening of the white matter and also areas that are oxygen deprived. We had no idea. Until my MRI in the summer of 2006. First time nuero said he thought I had Mito. All along we thought I would be fine. Just a little delayed. Cerebral Palsy at worst. Then in JAN 2007 AFTER TUBES, BIOPSIES..They LOWERED THE BOOM.Mito, not just any old kind either my very unspecified kind. My mommy and daddy and siblings just spoil me. I am included in everything and loved to pieces. Love the dance lessons from daddies arms. Mommies get up and go, just gets ahead of her sometimes..lol. My brothers and sister..think, I am one of the gang. They are always aware of me and tell me everything. I believe that JESUS is the way. HE IS MY LORD AND SAVIOR! I have been dedicated to him. My EEG shows lots of activity. But my MRI/MRS showed a water Lipoma, PVL, wasting, diffuse cerebral atrophy. They say my out look is poor. Jesus loves the little children, so how can I go wrong. My daily supplements and medications begin at 12 am, 1, 3 7, 8, 9, 10, 11, 1 pm, 2, 3, 4, 5, 6, 7, 8, 10, 11 pm. All go into my G-feeding tube. Into my J-tube I received 19 hours of formula feeding at 45 mls an hour. With J-tube water (bottled only) flushes that start at 1 am, 2, 3, 6, 7, 8, 11, 1 pm, 2, 4, 6, 8, 11. Weekly I have 2 teachers, 1 pt, 1 ot, 1 sp and 16 hours(most of the time) of nursing. Imagine the water bill? Electricity, paper towels, bathroom tissue, hand soap, purell, cleaning products, it takes to support 15-19 people a week. All the thermometers we go through, baby wipes, diaper creams, Tylenol, Advil, Pedialyte, nasal drops, baby bathe lotions. All the cost that a baby grows out of Juju has yet to out grow. Coffee, tea, sugar and cream because you have to give a little something back to the people that show up to take care of the boobah with us. Her pediatrician and doctor's are all in Philly. Julianna does have medical medicaid(not ssi or ssi med), but it is NJ based so it does not cover any co-pays nor her supplements. It is secondary to her primary that does not cover supplements. Equipment co-pays are 100's of dollars. It cost thousands of dollars + (not including illness meds) a year just for her co-pays and supplements. To visit everyone of her doctor's once a year ( which you know that is not the case), not including gas, tolls and parking garage fees. This is so overwhelming, but thank God for the village. Thank you for being part of the solution. It takes a team of hearts. WALK FOR A WISH ON OCT 17, 2010. JOIN TEAM JUJU. GIVING BACK HELPS US FEEL NORMAL. Kif1a newest dx. Confirmed through genome testing.