On the 365th day of her life, after a very difficult first year and 3 additional hospitalizations, Mya underwent open-heart surgery at Children’s Hospital Wisconsin in Milwaukee to repair her tricuspid valve, close an atrial septal defect (hole between the upper chambers), and reduce the right atrium that had become grossly enlarged as a result of her other heart defects and pulmonary hypertension.  The surgical results were outstanding and we consider her heart repaired.  The repair caused her pulmonary hypertension to be eliminated.

 Mya’s feeding issues remain.  She is still on a feeding tube, through which she gets nearly all of her nutrition.  Mya works with the feeding team in the GI Clinic of Milwaukee’s Children’s Hospital with the hopes of attaining the goals of eating age-appropriately and eliminating her feeding tube.  She also sees a speech therapist in Rice Lake on a weekly basis working toward the same goals. 

Elise is a 3 year old, sweet, adorable little girl that has been diagnosed with a disease called Niemann- Pick type C 1. It is an extremely rare degenerative genetic disease, which currently has no cure. This disease has several symptoms, here is a list of some : enlargement of liver and spleen, caused by reduced appetite, abdominal distension and pain. The enlarged spllen traps platelets and other blood cells causing lower cells circulating throughout the body. Storage in the brain(cerebellum) causes unsteady gait, slurred speech, difficulty swallowing, basal ganglia dyafunction that causes abnormal posturing of limbs, trunk, face and upper brainstem diseases causes impaired voluntary rapid eye movements (supranuclear gaze palsy) and sleep related disorders, including gelastic cataplexy which is sudden loss of muscle tone associated with laughter, sleep inversion ( sleepiness during the day and wakefullness during the night). In most cases involving the cerebral cortex and subcortical structions is responsible for gradual loss of intellectual abilities causing dementia and seizures. This disease has also been called " childhood alzheimers". In childhood onset death usually occurs around age 5-15 years of age.  Elise was delayed in her development but seemed to be in the lower end of ' typical' range of development for children her age. Elise also began to have seizures as well and then further testing was done. Eventually she was diagnosed with Storage disease and then in to tests discovering Niemann- Pick type C 1.   Feel free to visit Elise's caringbridge site at : www.caringbridge.org and type in the visit box: EliseBarton

Matthew  Age 13;  Has and eye disease called Retinitis Pigmentosis (RP), Which is a hereditary degeneration and atrophy of the retina.  Matt had sight at birth but his mother Ann was very attentive and noticed the first signs in Matthew, and he was diagnosed with RP at the age of 3.  Matthew is legally blind.

Jacob Age 8;  Has the same eye disease called Retinitis Pigmentosis (RP), Which is a hereditary degeneration and atrophy of the retina.  Jacob was diagnosed four days after his second birthday.  Jacob is also legally blind.  You can find more out on this disease at: http://en.wikipedia.org/wiki/Retinitis_pigmentosa

Valerie Age 12;  Valerie has a number of issues that affect her ability to do almost anything.  She has missed school much of the time this year due to many ‘Dr. visits, hospital stays, and recovering time from surgeries.  Her problems started when she was 5, with a “Impact Bowel syndrome” preventing her from urinating, and normal bowel functions, this progresses into “tethered cord syndrome” which had much the same effect, and after several more surgeries and treatments for leaky spinal fluid, and other complications she has been on bed rest and then developed Red Mans syndrome from all the antibiotics.  She is a patient at Gillette Hospital and has a very good prognosis now.  She hopes to get a new MRI and get back to being a young active 12 year old.

Jacob Age 3; On August 28th, when Jacob was 4 1/2 months old, I first noticed Jacob's spasm. It was this involuntary movement that was gentle, rhythmic, and occurred every 2-3 seconds. I thought to myself, "Hmm, this is odd, very very odd." I knew that this movement was NOT normal, but gave it another day to see if it happened again. Sure enough, the same time the next morning, upon awaking, Jacob started with this movement once again. After having an MRI, EEG, blood tests, and meeting with a Pediatric Neurologist, it was confirmed that Jacob has Idiopathic West Syndrome with infantile spasms.  He's idiopathic, meaning we have no cause for the start of his seizures and all of the associated symptoms.   This rare infantile epilepsy syndrome occurs 1 in 4,000 kids every year and our neurologist says he see only 2-3 cases a year. 70-85% of kids will develop abnormalities in mental status with specific deficits in development and cognitive function.  Jacob fits into this category in that he has basically remained the same, physically and congnitively, since the seizures started.  It's hard to put a developmental age on any of his skills because he's unique in his very own way

Bradyn Age 4; Celiac Disease: