Child Of The Month
By Barb Corol
Alondra was born in October 2013 diagnosed with Congenital Hipotonia, severe psychomotor retardation and disease of the nervous system.
Hipotonia is present at birth and is usually inherited or genetic. Hipotonia literally means loss of muscle tone. The condition was first described in 1956 among infants who were termed “floppy infants.” In healthy muscles some amount of stiffness or tension is always maintained even at rest. Tone of the abdominal muscles for example hold in the abdominal contents and that of the back keep the back straight and allow walking, standing, etc. Tone reduces during sleep. Hipotonia is a diseased condition that results in rubbery limbs that are unable to hold themselves.
When born infants have an accentuation of their spinal curve and protrusion of their abdomen, due to lack of muscle tone. Today this is also referred to as “floppy baby syndrome.” Children affected have a 30% chance of having someone in the family with a similar affliction. Both boys and girls are equally affected.
Hipotonia can be caused by a variety of conditions including those that involve the central nervous system, muscle disorders and genetic disorders. Some common causes can include but are not limited to Down Syndrome, Muscular Dystrophy and Cerebral Palsy.
Mom came to Niños Incapacitados in February 2015 on the recommendation of a friend. Sadly our first glimpse of Alondra was not in person but a picture of her lying in a hospital bed with multiple tubes attached to her tiny body. She spent much of her first year in hospital and Mom says the doctors were not giving her much hope. This was an extremely stressful time for Mom compounded by the despair of learning her husband and the father of her children decided to leave the family home. He does not support the family.
Niños Incapacitados has reimbursed Mom for hospital visits, transportation, neurological and nutrition consults, medicines, food supplements (as she is on a very specialized diet to try and increase her weight), feeding tube and all sterile equipment and supplies. To date this has amounted to $31,000 pesos. Mom contributes by working two days per week as a house cleaner.
Treatment plan involves managing the underlying cause or causes of Hipotonia. If the underlying cause cannot be treated, physiotherapy, occupational therapy and speech and language therapy can be alternative options. Niños Incapacitados will be there to offer any support Mom needs to help Alondra enjoy a quality of life. As Director of the Jocotopec Clinic, thank you for the opportunity of presenting some of our children to you.
Please remember our monthly meetings held every second Thursday at the Real de Chapala Hotel in Lower la Floresta. Coffee is served at 10:00 a.m. followed by the meeting at 10:30 a.m. We invite you to come and meet another one of the children we are helping.
If you would like to learn more about Niños Incapacitados, please visit our website at www.programaniños.org or call Barb Corol (376-766-5452).