Alma, Louie and Bob
My friend Alma asked me to write about her son, Louie, who was diagnosed with propionic acidemia when he was one month old. I found that I could not write Louie’s story without telling how he received a miracle — that miracle’s name is Alma — Joyce Putnam
Louie was born in a remote Alaskan Village. He was diagnosed with Propionic Acidemia when he was one month old. It was difficult for Louie’s parents to care for him for two reasons.
1) The people in his village live a subsistence life-style — fishing & hunting for much of the food they needed. Because of high costs of shipping to remote villages, the low-protein foods Louie needs are expensive. Fresh fruits and vegetables are often unavailable in the local store. There was also the risk that someone else would feed Louie food he was not allowed to eat. In a native village, kids belong to the tribe, so it is common for well-meaning relatives to offer food to all of the kids.
2) Medical care in the village is inadequate for anyone with major health problems. When Louie had a medical crisis, they had to wait for an airplane to come to his village. Then he could be flown to Fairbanks for medical treatment. On one of these trips to Fairbanks, his overwhelmed mother abandoned him while he was in the hospital.
Alma and Bob became Louie’s foster parents when he was 2 1/2 years old. Physically and mentally he was stilll an infant. He was tiny (undernourished). He had never learned to crawl or walk. Louie had major health problems. His prognosis was poor. PA had caused his rectum to fail. His ears and sinuses were chronically infected. Louie was expected to remain an infant the rest of his life. His muscles and bones were so weak, nobody ever expected him to learn to walk. He was not expected to live to age 5.
Today Louie is a 12 year old boy with the body of a small 8 year old (He is 47 inches tall and weighs 42 pounds.) Mentally he is a mischievous two-year old.
When he is healthy, Louie enjoys life. He can walk, climb, and ride a tricycle. He loves playing basketball, going for rides with Alma on her John Deere Gator, and going to school. He enjoys music and has his own guitar he likes to play. He shows off to get attention. He has a sense of humor and laughs a lot. He is full of love. He enjoys giving and receiving hugs. As any normal “two year-old”, his favorite people are his “Mama” and “Dada”, his adopted parents Alma and Bob.
Alma’s love (with Bob’s support) is the miracle that changed Louie’s life. That first year she stayed with him while he had colostomy surgery, PE tubes placed in his ears and a feeding tube inserted in his abdomen.
Alma took time to study about food. She knows how much protein and vegetable, fruit and grain that she feeds to Louie. She knows which foods have incomplete porteins that his body can digest and which have incomplete proteins he has to avoid. She knows to the gram how much protein he eats in a day.
Alma provided the tough love needed to teach Louie to crawl, then walk. She listened to him cry to be picked up while she waited for him to move toward her. She understood how much it hurt him to use muscles he had never used before. She also understood why it was important for him to learn to use those muscles.
Alma learned to know the early signs when Louie is developing an infection or other illness. Treatment is now started early, allowing him to be treated at home and not in the hospital.
As foster parents, Alma and Bob were willing to provide Louie with the special care he needed. They loved him as if he was one of their own. As his love grew, they knew that God had given him to them. When he was 5 years old, their love was strong enough to adopt a “special needs” child.
Today Louie enjoys life when he is healthy, but there are many days when he is not. He still has ear and sinus infections, that are becoming more frequent. His white cell count drops way below normal when he is sick. The list of drugs that no longer work to treat his infections grows longer. Providing him with adequate nutrition continues to be a challenge. When he is not feeling well, the only food he tolerates is provided by his formula which is fed through his feeding tube. Louie’s blood tests are discouraging. Many factors, such as the white blood cell count, are too low. Other factors, such as the amount of propionic acid in his system, are too high.
Equally of concern are the medical problems that can affect Louie’s quality of life — his ability to do the things he loves. Although he can walk, his bones are fragile and break easily. He wears orthotic supports in his shoes to support his ankles and to lessen the chance that he will fall and break a bone. He is losing his hearing. (This is not a typical symptom of pa). He now has to press his ear next to a speaker to hear the music he loves. Louie squints when he is looking at something that interest him. Alma worries that Louie will lose his eye sight next.
Alma and Bob know that the miracle that kept Louie alive for the last ten years may not last much longer. He has lived longer than many kids with pa. Althought there is no cure for the disease, Louie is proof that proper diet and medical care can make a difference in the lives of these children. It can give them quality of life — days when they can laugh and play — days when they can enjoy life.
Louie passed away on November 8, 2014. He lived to be 20 years old and is now running and leaping and praising God and we look forward to seeing him again with his body without any medical problems.