TARC Ambassador 2017, Madelyn Milton

TARC Ambassador 2017, Madelyn Milton - Ambassadors

Madelyn was born on September 8, 2011 at the Women’s hospital in Baton Rouge La, to the mother of Holly Colclough, Maddie is also a sister to Austin Colclough. We have call Madelyn “Maddie”, since birth. Maddie was born a normal healthy child. We had noticed that she was a little slower than other children her age. We first noticed that Maddie was not excelling for her age. When we would be around children her age and they were sitting up and moving around when Maddie may have rolled around a little bit but was not even attempting to sit up. We took Maddie to her doctor with our concerns, he had CT scans done on her which they thought she may have had Hydrocephalus. After seeing a neuro surgeon at Children’s hospital in New Orleans which he felt that everything was fine. Maddie’s doctor requested for a MRI to be done. Maddie had to do a swallow study on November 1, 2012, which she had failed. On this day our world changed forever, we were devastated. Maddie was admitted into the hospital and they discussed with us that she would have to have a Mickey tube for her feeding. We requested that they do the MRI while she was already admitted into the hospital. The day that Maddie was to go into Surgery we received the results from the MRI. They doctor stated that she has schizencephaly, he explained to us that she has a slit or clefts in her cerebral Hemispheres of her brain on her left side. They set up an appointment with a Neuro doctor in New Orleans that told us that Maddie will never talk, she may learn how to say a few words but it was not likely, she has told her that she may never walk. The left side of our brain controls the developmental of our body which Maddie was lacking.
Once we let all of this information sink in and she started her therapy and had many doctor appointments to take her too and having to adjust our life to fit Maddie’s needs. We realized that Maddie can do anything any other child can do but a lot slower and it is a challenger for her, but Maddie is always up for a challenge. We found out about a pageant that they were having for girls with special need, “Miss Very Special Louisiana”. We have entered Maddie in the pageant and she had so much fun, she felt so special and it was all about her. Maddie won Miss Very Special Louisiana for age group 4 and 5 years old.
We then found out about a softball league they had for kids with special needs. We were able to get her registered and she played softball and like always loved it. Maddie’s personality is just amazing, she never meets a stranger.

TARC Ambassador 2017, Stephanie Hooks

TARC Ambassador 2017, Stephanie Hooks - Ambassadors

Stephanie was born on December 30, 1981. She was diagnosed in utero with hydrocephalus (hydrocephalus is the buildup of too much cerebrospinal fluid in the brain) and delivered by C-section at 35 weeks gestation. Her first shunt was placed when she was less than a week old, a CT scan following this surgery revealed the presence of an AVM (A brain arteriovenous malformation (AVM) is a tangle of abnormal blood vessels connecting arteries and veins in the brain). Removal of the AVM left her with weakness on the right side of her body. Stephanie had extreme developmental disabilities requiring physical and occupational therapy at Children’s Hospital in New Orleans. She entered the Livingston Parish Public School system at age 3 attending Pine Ridge Special Education School. It was there that many professionals from teachers to therapists and more, helped her to reach her potential and where it was discovered that she had autism. With the help of the school she learned to walk at age 4 and was toilet trained at age 8. During this time, Stephanie had numerous hydrocephalus related shunt problems that had to be handled surgically. To date she has had a dozen shunt revisions/replacements. Her most recent was in 2012 at Ochsner Hospital in New Orleans where Neurosurgeon Dr. C J Bui replaced her 13 year old VA shunt with a state of the art programmable VP shunt, she also has a special relationship with her primary care Ochsner physician Dr. Michael Dunn who, along with Nurse Lisa, can always make her feel better.

While at Pine Ridge Stephanie participated in the Louisiana Special Olympics and was twice crowned Queen of their Fall Festival. In her younger years, she participated in another Very Special Miss & Master Louisiana Pageant where she twice won the title of Queen in her division. At age 4, Stephanie welcomed her sister Catherine into the family. While Catherine outpaced Stephanie, developing at a normal rate, they often played together and Stephanie learned plenty from her sister. Both girls graduated from their respective Livingston Parish Schools in 2004. Stephanie at age 23 from Pine Ridge and Catherine at age 18 from Springfield High School. Today Catherine, a graduate of SLU, lives in Bethesda Maryland and Stephanie is proud to announce that she will have a brother in law when Catherine marries her fiancé Rick Sause of Maryland. Stephanie is a big fan of SLU athletics, attending football games and is a season ticket holder for the Lady Lions Basketball Team, attending all the home games sitting on the floor in the “Top Cat” section.

Stephanie lives with her parents Mary and Kirk Hooks. She is blessed to live next door to her grandmother Pauline Frisbie with whom she and her parents lived with while rebuilding their home after their house was lost to a fire in November 2014. Stephanie enjoys a close friendship with her cousin Denise Landry who also lives close by and often helps in Stephanie’s care when necessary. She is also blessed with a very special friendship with Rich Poling who can often be found at Stephanie’s house, visiting and reading with her many favorite books including Pickle Things and The Night Before Christmas. Stephanie attends St. Margaret Catholic Church as well as New Beulah Baptist Church, both are near and dear to her heart. She enjoys eating out, going for long rides (as long as we don’t stop) and shopping. She enjoys being at home, playing with her favorite things in her bedroom, watching sports and game shows on television. She is a Saints fan, never misses a game on television and knows the Southeastern Lions cheer as well as LSU. Stephanie loves music, enjoys listening to the radio, especially “Johnny in the Morning” and can name the title and artist of most contemporary songs. She enjoys the SLU “Spirit of the Southland Band” thanks to her sisters’ participation during her college years. Stephanie loves animals and has 4 dogs, Mocha, Bianca, Spock and our newest Chachi a rescue dog and 1 cat she named Blackie.

Stephanie was on the waiver waiting list for 11 years after leaving the public school system. She has been involved in other adult day habilitation programs but found her place at TARC and is very comfortable and happy to be there. It is an honor and privilege to be named the 2017 Ambassador for TARC.