Truly blessed

In August of 2007, Brett and Jennifer Fontenot welcomed their first child into the world, a little baby girl who they named Natalie. Jennifer recalled, “My first thought when Natalie was born was that she was so beautiful and cute. She was perfect.”
In that moment, Brett and Jennifer could not imagine that their “beautiful” baby girl would be forced to face severe hardships in life that would limit her ability to do things children her age are able to do such as: walk, eat food regularly, and even go to school.
It wasn’t until Natalie was three-months old however, that her mother first noticed that Natalie was not able to do things that other babies her age were doing.
Jennifer said, “I had taken Natalie for her three month pictures and there was a lady there that I knew who was also having her baby’s three month pictures taken. The photographer was getting the other lady’s baby to pushup on it’s arms for the picture. I had to tell the photographer, when it was Natalie’s turn, that she couldn’t pushup on her arms like that. That was the first time I thought maybe something wasn’t right because she was the same age as the baby that was able to pushup.”
In June of 2008, after numerous doctor visits and several tests later, Brett and Jennifer’s little girl was diagnosed with Spinal Muscular Atrophy (SMA), which causes Natalie to be in a wheelchair due to muscle weakness and poor muscle tone.
After hearing her daughter’s diagnosis, Jennifer said, “I started researching online and had found things that said her life expectancy was two years. I was freaking out because I had this beautiful baby that I loved and after two years she could be gone.”
The disease however, has three different types which are: Type 1, Type 2, and Type 3. Type 1 is the most severe, while Type 3 is the least severe.
It was while in Utah, having test run on Natalie, that the family finally learned what type Natalie was, which helped calm her parents who believed their daughter would only live for two years.
Brett said, “When Natalie was 14 months we went to Salt Lake City to have tests run because that is where they do a lot of trials for SMA. That is where we learned that Natalie had Type 2 SMA.”
Jennifer then said, “Finding out that she was Type 2 made me feel a little better because then I knew that Natalie’s life expectancy was greater than two-years.”
Having their daughter diagnosed with SMA completely changed Brett and Jennifer’s life. The first-time parents had to prepare to raise a child differently than most.
Jennifer, who teaches English at Pine Prairie High, said, “The latest we can ever sleep is 6:30. We wake up and then begin our routine, which lasts an hour and a half. We put a vest on Natalie, which shakes her body to help loosen up mucus and stuff that she can’t cough up. We use a suction device to get as much of the mucus out that we can and then we do this again at night. If she is sick then we will have to get up in the middle of the night to repeat the treatments.”
What is as amazing as the work Brett and Jennifer do is the attitude Natalie maintains through out her everyday treatments. Jennifer said, “It is amazing though that Natalie never complains.”
This process is one that Jennifer and Brett have been able to perform because of the help they have received from people like Brett’s mother Sandy, who Jennifer said “is always there to help us out,” and a nurse that has recently began helping out three times a week.
For Brett, his occupation has also provided him with tools to help him better take care of his daughter.
Brett, who is a firefighter for Eunice Fire Department, said, “Natalie was on a trial medication that was to increase her muscle tone, but after we noticed it wasn’t doing anything we decided to take her off of the medicine. We did not realize that the medicine was a seizure medication and you can’t just stop taking it.”
After taking Natalie off of this medication, her father took her to the dentist on one of his days off of work. It was while at the dentist with his daughter that Brett was forced to use his firefighter training to save the life of his own child.
Brett said, “Because we had just taken Natalie off of the trial medication, she began to have seizures while she was getting her teeth cleaned. I immediately removed Natalie from her wheelchair and laid her on the floor. There was mucus caught in her wind pipe so she stopped breathing, and in that moment I couldn’t be Natalie’s dad. I had to be a fireman and I had to do my job. I performed CPR and was able to clear her wind pipe for her to be able to breathe again.”
While these types of situations are more common for the eight-year old girl than for most kids, for Natalie’s family it is all worth it.
Jennifer said, “There is definitely more good than bad that we experience. One of the most amazing things for us to see is that every person that Natalie meets says how touched they are by her.”
When Natalie was two-years old, her parents welcomed a new baby into the world. Natalie became a big sister to a little brother named Luke, and when it comes to Natalie’s relationship with her brother, she is just like any other child.
Natalie, who is a lover of all animals and who hopes to be a penguin scientist, and Luke, who is a lover of the outdoors and hunting, according to their mom, “cannot discuss hunting with each other.”
Jennifer said, “Just like a typical sibling relationship, Natalie and Luke fight, especially if Luke goes hunting and kills something. Natalie does not like that. She didn’t even want us to kill a fly in the house one day.”
While Natalie and Luke’s relationship is similar to any other siblings, there is a gift that Natalie has provided her brother with, the gift of understanding.
Brett said, “Luke is understanding because of what he has seen with his sister. There was a little boy that Luke was playing with at our house one day that is Autistic. The little boy will not speak at all, but he will run around and play with Luke.”
Following her husband’s statement, Jennifer said, “I really believe that having Natalie as a sister has taught Luke not to judge or pick-on people and to be more accepting.”
While Natalie’s life for now will remain very different than someone who doesn’t have SMA, the young girl’s parents feel that it is important for people to understand how difficult this can be.
Jennifer said, “One in 40 people carry this gene, and I try to tell people that it is very important to realize this before you have children. You don’t know if your child will have it, but it is better to make sure that you are ready for special children in-case something like this happens to you.”
For Brett and Jennifer though, no matter how difficult a situation may be, it is the love that they have for their daughter that makes every task they do for her worth it.
Jennifer said, “There are a lot of people that love that little girl and would do anything for her no matter what the task may be. We will always do whatever is necessary to make sure Natalie is taken care of.”