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Lowe Syndrome

Hello Utah Kids Family.  My name is Molly Barrington and here is some information about Lowe Syndrome.

Lowe Syndrome is a rare genetic disorder that is also called Oculocerebralrenal Syndrome which means that this syndrome mainly affects the eyes, brain and kidneys.  Boys born with this syndrome are born with cataracts, varying degrees of intellectual disability, kidney disease, low muscle tone, and sometimes glaucoma and epilepsy. 

Lowe Syndrome is passed on the sex chromosome and is recessive.  Females carry it and males are affected by it. It is estimated that 1 in 500,000 people are affected by Lowe Syndrome and there are about 300 cases reported in the world right now.  I am a carrier of this syndrome and 2 of my 3 brothers were affected by it.  My son also has this syndrome.

My son Jonny is a happy, cheerful boy of 2.  He was born with cataracts and glaucoma and he had 5 surgeries and 8 other exams under anesthesia on his eyes before he has 6 months old.  He is legally blind without his glasses.  We hope that he will be able to have artificial lenses implanted after he turns 3.  He also spent the first 10 days of his life in the NICU because he had trouble eating and breathing.  

Jonny sees several therapists through the Early Intervention program Kids on the Move.  He rolls and scoots all over the place but we are still working on crawling, walking, and strength building.  He also has trouble with eating.  He has a g-tube to help him get enough to eat and drink.  We are working on eating pureed food.  Jonny takes several medicines to help his kidneys function properly and to help his body maintain proper balances.  He sees 3 different specialists at Primary Children’s Hospital and also has a wonderful Pediatrician.  Modern medicine has greatly improved the quality of life for people with Lowe Syndrome.  I have seen this change with my brothers and now my son.  We have high hopes for Jonny’s future and we look forward learning and growing.

For more information on Lowe Syndrome you can go to lowesyndrome.org or http://ghr.nlm.nih.gov/condition/lowe-syndrome

Utah Kids Foundation - Kid of the Month - February 2016

Makenzie was born December 22, 2005. We were so excited to have a happy healthy baby girl. But Nothing could prepare us for what was about to come our way. In February 2007 she got RSV which actually saved her life. They took an x-ray of her chest to see how bad the RSV was and that is when we found out she was born with Congenital Coronary Artery Disease and ended up with Cardiomyopathy. After her first open heart surgery at Primary Children's Hospital to correct her artery, we then found out in April that it didn't work and she needed a Heart Transplant. She got life flighted to Denver Colorado to wait for the perfect heart. 26 days later we got the call and she received the most precious gift anyone could ever give us. A second chance for our baby girl. 

It has been a very scary but humbling journey. She is now 10 years old, she is in 4th grade, she loves to read and loves science. She loves to play with her 3 sisters and 2 brother. Her favorite thing to do is bake and cook. We always have baked goods in the house. Her favorite band is 1D and she loves to watch movies with the family. Her favorite season is summer because she gets to play out side and doesn't have to wear a mask everywhere (germs yuck)! 

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Amazing new Respite Care and Day Program in Riverton

I had the opportunity this weekend to check out Bear-O Care, a new business venture of Michael and Ruth Braga.  They realized that there are few options for respite in the community and even less options where siblings can stay with their special needs child.  With their son Brandon (age 17 with Autism) nearing completion from High School, they also wanted an adult day program that would cater to his needs.

The mission of Bear-O Care is to "provide a unique community approach to caring for individuals with multiple disabilities.  By including and collaborating with families, caregivers, and educators.they will provide a safe, supportive environment that maintains and builds upon the abilities and communication methods used by each individual."

They plan to begin with their day program for those individuals age 18 and up.  They will run from 9 AM to 3 PM, Monday thru Friday for 46 weeks per year.  They have a physical therapy and occupational therapy room, a recreation room, a cafeteria and crafts room along with adaptive restrooms.  There is also a sensory / cool off room for those who might need a little quiet time.  There will be 2 adults per room at all times, including the restroom for those clients needing assistance.

Respite care will be available on Friday and Saturday nights from 6 to 9 PM.  Unlike other programs, they will take in siblings ages 6 - 17 years old along with the client.  They plan to cap the total number of children as follows:

15 children with special needs
20 siblings (without special needs)

for a total of 35 children.

There will be nursing on staff to handle feeding tubes and trach care.

Bear-O Care is located at 2464 West 12600 South Suite 180, Riverton, UT 84065.  Their phone is (801) 419-4731.  They will be opening a location in Lehi this year.

While they are pending final approval to open and for their nonprofit status to be complete, they are still looking for many items.  Those items can be found at http://www.bearocare.org/#!donate/c1ghi

Utah Kids Foundation looks forward to partnering with Bear-O Care for future events!

~ Syndi

Utah Kids Foundation - Kid of the Month - January 2016

Zachary 9 years old, has had many issues since 2 weeks old. He had projectile vomiting and wasn't gaining weight they initially diagnosed him with a milk intolerance and then added soy but he continued to vomit so they ran every other test possible. Come to find out the daycare he was at was not paying attention and was feeding him milk the entire time therefore damaging his intestines possibly permanently. We left at 15 months and he was starting to get better. He also wasnt talking and add a year old we found out that he had a lot of hearing loss from ear infections . When we took him out of the take care of 15 months we also put tubes in his ears and by 18 months he was talking. He has been fine developmentally since then he's just very small and has had failure to thrive. He has had sensory issues and anxiety issues since two years old . at nine years old now it looks like they are going to add a diagnosis of cyclic vomiting syndrome.

Zachary loves legos and a shirt join the lego league at school in is doing well there he also likes to dance doing hip-hop and half and perform this question these are both really good thing for his social anxiety.

He has Milk soy Protien Intolerance, Sensory Processing Disorder, Failure to Thrive, Severe Food Allergies, OCD, ADHD, anxiety and depression, also medically induced PTSD. He was just diagnosed with cyclic vomiting syndrome possibly needing a feeding tube. 

We got a service dog for Lucas last year and he is doing great. Then our dog was attacked she was unable to work and we had to retire her. Zachary has had some regression since then. A friend gifted us a dog and he is great but needs additional training. We are working on getting training for the dog. And Lucas seems to be doing well with any sort of animal.