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Verna is the daughter of Lawrence and Malinda Martin from Versailles, Missouri. They attended their first Symposium in '94 in nearby Columbia several months after Verna was born. Malinda handed me this history at the our '96 Symposium. Verna has the Mennonite classic mutation of MSUD.

March 3, 1994, dawned bright and clear - a pure reflection of the joy and happiness that filled our hearts as we welcomed the birth of our second daughter Verna. She weighed 9 lb. 2 oz. and was 22 in. long. She had a head full of black hair. A dream come true.

As we rejoiced, and thanked God, the Almighty Creator, for again having blessed us with the privilege and responsibility of caring and loving another one of his children. Little did we realize the responsibilities, cares and many anxious hours that awaited us in the coming days and months.

Verna was very contented and fed really well the first day. By the third day, she got more sleepy. We tried a lot of things to wake her up enough to feed. By the fourth day, she seemed somewhat irritable-like, just busting out of sleep with a rather shrill cry, and showing some slight signs of arching her back. Her feedings were very short. All of these signs were new to us. It did not alarm us enough to take her to a doctor.

We called our midwife several times, who was unfortunately not familiar with MSUD. But she did advise us to take her to a doctor if our instinct led us to. But as for herself, she felt that Verna was just a very sleepy baby and it would probably take a few more days for her to become more awake and active.

On the sixth day she gave a very nice smile, giving us some hope and encouragement. But we often had a worried feeling. On the ninth day, we had some visitors who thought her cry sounded like a sick puppy. All this time she became less active and would arch her back when we tried to feed her. She only took a few swallows, then she turned blue from choking. She would also take her little fists and push herself away, almost like she knew she wasn't getting the proper formula.

During the night of the ninth day, she awoke almost every half hour with a very scared, shrill cry. Even though she awoke often, she only nursed once during that night.

Saturday, March 12, was the tenth day of Verna's life. Our midwife came to give Verna her check-up. She was rather alarmed when she saw how lethargic she had become by this time. It seemed as though she was blind, as she would not respond with her eyes. She also thought it seemed like Verna had a neurological problem, since she seemed so lifeless. She therefore made an appointment with a neurologist at the University Hospital in Columbia for Monday.

But much to our relief, a higher hand took over, and through the grapevine word was spread through the community about Verna's conditions. A very anxious mother called - the mother of an MSUD child in the community. She very strongly advised that we see a doctor immediately, even though it was already 8:30 Saturday evening. She told us to smell Verna's diaper. We compared the smell with our other daughter's diaper and there was an unmistakable difference. Her husband very graciously called their doctor and made an appointment with him to meet us in the emergency room yet that night.

The stark news struck us at first. But we were relieved to know she wasn't blind, and now we knew what was wrong with our baby. It was a relief to hand her over to the professionals to take care of her.

We met Dr. Richard Hillman and Julie Grasela (the dietitian) at the University Hospital in Columbia, MO, where (Verna) was diagnosed with MSUD and put on an IV. She was also started on formula. She would not take her bottle, so she was fed through an NG tube. Her leucine levels were at 4186 micromols/liter (55 mg/dl).

After being in the hospital 10 days, she was brought home, where we slowly tried to learn how to care for our baby. At first it seemed like we would never learn. But by taking one day at a time, with the encouragement and help from friends, neighbors and others, and most of all, much strength and guidance from above, we slowly made progress.

She had ups and downs as we were trying to keep her amino acids in line. It seemed the first year her levels would fluctuate an awful lot. When she was 3 months old, she became very deficient in isoleucine and valine and was hospitalized for 6 days until her levels returned to where they should be.

She had her share of the flu. Some times we had to put the NG tube down to feed her till she was over her flu. But she had a lot of good days. She eats well and takes her formula well when her health and levels are in line.

Verna is now 2 years old, and is a very healthy girl. She is truly a blessing to our home, and has brought much sunshine into our lives. We have often been strengthened by her will power and courage and many smiles, even when she is coping with a flu that has elevated her levels. Even though providing for the many needs (physical and material) has been a challenge, and sometimes almost seemed impossible for a child with MSUD, we believe we would all admit that providing the soul with its spiritual needs and being a good example is still the greatest challenge. And as with all other needs, is only possible with help from God.

May we be strengthened spiritually, and drawn closer to our God, as we willing take care, to the best of our knowledge, of God's special children. May God bless you all,

- The Lawrence & Malinda Martin Family (Lucille 4, Verna 2, and Lavern 1)

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The MSUD Family Support Group is currently funding several research projects and we are proactively looking for researchers interested in developing new treatments or finding a cure for MSUD. Significant funding is necessary if we are to accomplish this goal.
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