Archive for September, 2010

RE-VISITING ANOTHER RAMP: THE GLADS

Wednesday, September 29th, 2010

We had the pleasure of meeting the Glad family in June of this year after being contacted by Neil, a Lieutenant Colonel in the Army National Guard, while he was stationed in Azerbaijan.  He and his wife of 18 years, Mary, are parents to 7 children, Tiffany, James, Kenneth, Michael, Anna, Matthew, and Joshua.

Glad FinalNeil enjoys reading the local news while stationed overseas and while reading the Deseret News he was moved by an article written about the Kyle Korver Foundation (Seer Group) and the services we are providing the families in the Salt Lake valley.  He then contacted us without his wife’s knowledge asking for any kind of help we could provide.  There was no way to get Matthew in and out of the house without Mary carrying him. With a recurring back injury it was difficult if not impossible to do without assistance.  Mary received a quote of $4900 to build a ramp for the house, but with all of the repairs needed on the home it was going to have to be added to the list of things that would come with time.

But lets back up a bit, back to when Matthew was born.

When Mary was pregnant with Matthew everything was normal until about a 7 days prior to his due date when she could no longer feel him moving.  She went to the doctor and everything seemed normal, they could hear a heartbeat although the ultrasounds couldn’t see his head because of where he was positioned, it was normal.  The doctor decided to induce Mary just to be safe.  When he was born he was kicking and screaming like a normal baby.  Two days following his birth the nurse noticed that his head was swelling.  They performed a cat scan and the doctor could only see blood on the scan.  They immediately sent him to Primary Children’s Hospital in Salt Lake City to drain the blood from is brain.  It took 6 weeks to drain all of it.  The doctors informed Neil and Mary that his life expectancy would only be five years, he would be in a permanent vegetative state and he would be sick all of the time.  That was thirteen years ago.

Today Matthew is a lovable young man is surrounded by a wonderful family that celebrates his daily progress.  He almost never gets sick and gets around with the use of a wheel chair.  Although he not able to communicate verbally, his mom knows when he is happy, when he is sad, when he is in pain and when he is feeling joy.  He is not able to move most of his body, but he does have full use of his left hand, which his mom says is “really strong.”

The family had purchased their current home, which has been in the family for generations, in 2008 to ensure their parents would not lose it due to financial difficulty.  The house, originally built in the late 1800s, was in need of a lot of work. A ramp being one of the most important!

Such a small thing as a ramp has been a huge blessing to the family.  Matthew loves to be with his family and while everyone else was out playing he was not able to spend time with them.  Now his mom can bring him outside where his brothers and sisters play with him and tease him and he gets to spend precious time with them. It is through your support, anyone reading this, and through the purchases of Seer Clothing, that we are able to be apart of the lives of great families like the Glad’s, one that are gracious, loving, and generous; a true family.  Neil has served in the military for many years now and people would think of him as their hero.  He, however, would tell you that Matthew is his hero. 

CHECKING BACK IN WITH THE GOMEZ FAMILY

Wednesday, September 15th, 2010

We thought we would go back over the story, start to finish, of their family life, and how they are doing now they have the new ramp and carpet. Here’s a story written by our own Jenny Daniels.

Manuel and Janette Gomez met at the University of Puerto Rico and became college sweethearts.  They were married eleven years ago in their home country.  Manuel, inspired by the Janette’s large family, wanted six kids.  She, however, wanted two kids.  So far they have met in the middle and have been blessed with four beautiful children. When Alondra was six months old Janette started noticing that she wasn’t moving like a baby her age should be moving.  She wouldn’t roll over and instead of crawling she would drag herself across the floor.  Janette started calling doctors to see what could be wrong.  She was told that she just had a “lazy baby.” Eventually she was tested for multiple sclerosis, spin bifida and muscular dystrophy.  The tests came back negative for all three and all of her blood work was normal. Januel, who is a year and a half younger than Alondra, started displaying some of the same symptoms when he was six months old. She knew something was different so Janette jumped on the internet and through hours of research and phone calls she found Dr. Sandra Reyna, a geneticist at the University of Utah and Dr. Kathryn Swoboda, a neurologist from Primary Children’s Hospital in Salt Lake City, UT.  Janette was told to bring her kids to Primary Children’s to have them tested. So they packed up the family and headed to Utah.

On September 20, 2004 both Alondra and Januel were tested and on September 21 they were diagnosed with spinal muscular atrophy, or SMA, a neuromuscular disease characterized by degeneration of motor neurons resulting in progressive muscular atrophy and weakness. They were 2 ½ and 1 ½ years old respectively.  There are no facilities in Puerto Rico with the ability to test for SMA nor treat it. In 2005 the Gomez family did an incredible thing for their children, and that is move to Utah so that the kids could be involved in a drug trial and treated for SMA. They left behind their families, their job, their home, and any financial security so Alondra and Januel could be treated.  During their initial stay here they were flooded with checks, gift cards, money orders from family members, friends, and people they didn’t even know.  They were people from all walks of life and all different faiths.

With every year the kids needed more room due to new equipment.  They had moved 11 times since they arrived here in 2005.  Their heavy duty wheelchairs could not be stored at home because there was no way to get them in and out of the house.  Janette had worked out a system where she would leave the wheelchairs at their school and she would carry them everywhere they went.  She has done this for years without complaint in all of the different homes they have lived in.  They were able to purchase their first home earlier this year, but it needed quite a bit of work before they could move in.  In addition to the need of a ramp the carpet was in terrible shape. Manuel and Janette thought they were going to put the repairs on a credit card in order to make the house functional.  The family had been working with Wheelchair Utah for the kids’ wheelchair needs. Meg Johnson, the Director, contacted Seer Group on behalf of the Gomez family before they moved into their home.  Because of that one phone call, we were able to replace the carpet, install the ramp and have it waiting for them the day they moved in!!

Prior to having the ramp installed the kids were completely dependent on mom or dad carrying them in and out of the house and were often stuck inside of the house. Their wheelchairs were stored either in the vehicles or at their school so they were not able to use the wheelchairs at home.  With the ramp they now have the freedom to move in and out of the house whenever they want.  They are able to get outside and play, or meet with friends.  The ability to go outside at any given moment seems like it would be somewhat insignificant, but to these kids it makes all the difference in the world. They get a chance to be kids!!

Although the journey they are on has and continues to be a roller coaster, they consider themselves so blessed.  Janette told us “We know not to take anything for granted because we have kids with SMA and we are grateful for that.” She said, “We just try to enjoy each other as much as possible.”  They will often put off chores on the weekend so they can do just that.

The Gomez family is loving, humble, and gracious.  The kids are playful and sweet and clearly the product of giving and strong parents.  We at the Kyle Korver Foundation are blessed and truly honored to have been able to work with such a wonderful family.The Gomez Ramp