Determination and Victory: Matthew’s Story

February 14, 2006 by Lori Potts, PT

The boys got a case of spring fever and sneaked out the house to go "frogging" by the family pool. It was an overcast, rainy spring day, but they’d had enough of being indoors, and quietly exited via the back door. To them, the day was just right -- the world could not have seemed more perfect.

Until disaster struck.

Matthew, a typically adventurous two-year old, fell into the pool, probably hitting his head. Big brother ran for help and rescue action began at once – CPR and an urgent call for the ambulance.

In spite of hopeful diagnostic results and the best possible care, life was now a nightmare for Matthew and his family. Within days of the accident, extreme muscle spasticity set in, arching Matthew backward till "there was a crease in his back" remembers his mother, Paula. His teeth were clenched; his muscles were so tense that they pushed out his various catheters.

And the pain. Morphine, Versed, Valium; one drug after another was added to Matthew's regimen, but nothing relieved the terrible screaming.

Two months later, it was a deadlock. Matthew was addicted to seven or eight drugs at maximum adult dosage, causing him to crash from overdose a couple of times. Yet all this bought him only two to ten minutes of respite each hour.

The doctors were at a loss. No tests could explain why Matthew was doing so poorly, and they did not expect him to survive. The social worker recommended putting Matthew in a home.

At this point, Matthew had some lucky breaks. A Baclofen pump brought his spasticity under control. But Matthew's luckiest break was his family. Two determined parents and seven siblings rallied around, determined to help Matthew win his war. They fought to bring him home to the family. With your own private cheerleading squad / exercise team / fan club, who wouldn't make headway?

It wasn't easy. They worked out an intensive regimen - Physical, Occupational, and Cranio-sacral Therapy. And they all hurt along with him as he went through drug withdrawal. But six months later, Matthew was drug-free and has remained so to this day.

Convinced that he was ''in there,'' and needed academic and social stimulation, Paula even got Matthew into a regular Kindergarten class! Though the teachers were skeptical, they agreed to take him. The other Kindergarten children didn’t even notice Matthew's handicaps. He was "just Matt'' to them, and they’d argue over who got to play with him.

At six years, Matthew was healthy, with no seizures. He relearned how to eat, and began to talk. For Christmas, a local Elks chapter and friends quickly raised the funds needed for a Rustler Tricycle. Amid the joy and excitement, Matthew said the words ''bike'' and ''Santa.'' In time, his personality matured to between five and six years, just like kids his age.


Now Matthew is in second grade, spending most of his time in the general class, and only part time in special ed. His general ed classmates are all on a list to do certain activities with him – he is a very popular guy. Matthew uses a Pacer gait trainer. At first, movement in the Pacer was slow, but now Matthew uses it every day between classes and going to lunch.

Matthew participates in a Snug-Suit program at Children’s Hospital, which gives his brain sensory input and promotes muscle activity. His posture has improved, and along with it, his speech. And as he expresses himself better, his personality comes out more and more. Matthew rides the regular school bus now, and can go on field trips with his class instead of being alone on a special ed bus.

At first, the parents had to battle for each victory at the school. Now the school has started to pick up the ball and get services and equipment for Matthew! Even Matt's doctors are convinced. Where they once doubted his survival, they now expect yet more recovery in the coming years.

Children's Hospital has asked Paula to talk with and encourage other parents and families who are experiencing similar traumas. Although this can be hard for her, Paula remembers wishing someone had been there for her. Besides, Matthew’s story is a great victory and should be shared.

All of Matthew’s siblings helped with therapy, and should be honored, too. They were the ones who wouldn't hear of Matthew living anywhere else than with the family. And now his doctors will agree, there’s just no telling where Matthew’s story will go, thanks to a gutsy kid and the determination of his family.

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