Fight SMA Chapter: Fight SMA Nevada

Matthew C. Bonnell June 7, 2005 - March 30, 2006

Bonnell Family Reno, Nevada Email: mishalee35@sbcglobal.net Phone: (775) 829-9392

Past Events:

SMA Awareness Reception
October 14, 2006 1:00 pm - 3:00 pm
Nevada Historical Society - 1650 North Virginia

We invite anyone that has been touched by SMA to come and learn more about current SMA research to meet other people who have been affected by SMA and to learn about the formation of the new FightSMA Nevada chapter.

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The Bonnell Family

Matthew's Story

Matthew came into our lives on June 7, 2005, a healthy 6 Lb 9 Oz, 19 inch little boy. He was a little angel, did not cry a lot or very loud. Mommy was worried about this but the nurses said to enjoy it while it lasted. Around two months of age his Great Grandmother and Great Aunt noticed that he did not hold his head up well, but the doctor did seem concerned so we were not either.

At four months we noticed that he did not like doing tummy time and was still not holding his head well. We thought that it might be that we had not had a lot of time to work with him due to moving to a new apartment. Mommy took Matthew to his new doctor; she was concerned but wanted to see if maybe he was just a little behind in development. We worked a lot with him and his tummy time.

At five months he still hated tummy time and would not lift his head. We took him into the doctor again. She checked him over and looked at his tongue. She said that there was a problem and she sent us to a neurologist.

The neurologist checked Matthew and looked at his tongue. We later found out that one of the signs of SMA is facilitations of the tongue even if the infant is not crying. The neurologist said that he thought that Matthew had SMA but wanted to do an EMG to try and confirm it. That afternoon we had the EMG done. The neurologist showed us the results and said that it supported his diagnosis of SMA. He said we needed to do a DNA test to confirm it. A couple of days later we had blood taken and sent to the lab for the DNA test.

On December 21, 2005 the neurologist gave us the results and said that the results confirmed the diagnoses of SMA. Matthew had SMA type 1; he had no SMN1 gene and less than 2 SMN2 genes. Our Christmas was a day of mixed emotions. I got sick on Christmas day and Matthew had his first hospital stay on New Years Eve for bronchitis. We had a bad flood at the same time which made it hard for his brother and me to visit Matthew and Mommy in the Hospital.

On January 26, 2006 Matthew had surgery to insert a G-tube to help him eat since he was having troubles sucking from his bottle. He started gaining weight and growing after that. For the next couple of months it was getting his feeding scheduling and amounts figured out and figuring out how to use the feeding pump and other equipment. Matthew got used to the feedings and the night time preparations quickly. He was a happy little boy and we enjoyed every minute we could be with him.

On March 30th 2006 we had a call from a doctor at Stanford, he was working on a drug to help children with SMA. We were going to be able to get Matthew into the next phase of the testing. His assistant had even faxed the paperwork to my work. Matthew would not take his nap like he usually did after I got home from work. That evening we went to the store for groceries, a printer/fax, and fabric for new blankets.

Matthew was his normal happy self at the store and when we left the store he fell asleep in his car seat like did a lot of the times. We got home unload the groceries, then Mommy went to take him out of his car seat. She noticed that he was white and realized he was not breathing. She called 911 and I tried CPR. Since the fire station was only 5 blocks away, the EMTs arrived in a few minutes. They tried everything they could in the apartment and all the way to the hospital. Mommy went with him in the ambulance, big brother and I went in the car. When his brother and I got to the hospital we were led into a room where Mommy was and found out that they could not revive him. We said our goodbyes in the ER room and took the longest toughest drive home ever. We will always remember his smile, his laugh and how he loved to sleep with Daddy, play with Mommy, laugh at big brother, and watch the Doodlebops.

We will always love you and remember you.

Love Mommy, Daddy and Johnathan (Big Brother)

Our Little Man
Our little Man, Boo
Spread his wings and flew
Flying with the Eagle and the Doves
Watching us from up above
He is now our Guardian Angel
To help and guide us in the days to come

One day we will see him again
Until then we will remember
His laugh, his smile, his touch
Even his smelly hands and feet
The way that even through all his trials
he would still smile at everyone

He taught us to Love honestly and totally
That a smile can brighten a room more than the sun
That a simple laugh can be heard far away
That a baby's touch can speak louder than words
That eyes can grab you stronger than hands
He helped us remember that the best things in life
Are the most basic, Love and Family

Until we meet again
We pray for Jesus to watch over him
Our Strong, Beautiful, Little man, Boo

We miss you, and will love you forever

Mama, Dada and Johnathan