Child Of The Month
By Rich Petersen
Ambar now 11 was diagnosed with Polyarticular Juvenile Rheumatoid Arthritis (PJRA) at the age of seven. Arthritis is a complex family of musculoskeletal disorders consisting of more than 100 different diseases or condition that destroy joints, bones, muscles, cartilage and other connective tissues hampering and even halting physical movement. Juvenile arthritis (JA) is an umbrella term used to describe the many autoimmune and inflammatory conditions that can develop in children ages 16 and younger.
The polyarticular type, more common in girls than in boys, affects five or more joints. The small joints such as those in the hands and feet are most likely to be affected. This type is identical to adult type Rheumatoid Arthritis.
Although the exact cause is still unclear, arthritis is believed to be a disease of the immune system. The immune system protects the body from infections and certain diseases. In PJRA, the body’s immune system attacks its own cells and tissues. It’s not known why this happens but it is believed that heredity and environment play a major role.
Ambar became a client of Niños Incapacitados last July 2013 having just moved to the area with her family. Thanks to Mom’s tenacity they have been relocated to a brand new housing development subsidized by the government. Mom said this is much better for Ambar as they now have a proper home with tiled flooring and indoor plumbing.
For the next six months, Ambar appeared to be managing well on the non-steroidal anti-inflammatory drugs. She continued her therapy program at Fundacion Teleton, which is a government funded therapy program in Guadalajara. She was able to attend school on a part time basis. Ambar was fitted with special arm and leg splints and used a motorized wheelchair loaned to her by Fundacion Teleton. Niños Incapacitados have reimbursed the family 6000 pesos for medicines and transportation.
In February of this year, Mom informed us that Ambar’s condition had deteriorated and she was dying. Her internal organs were shutting down. The family was receiving grief counselling through Fundacion Teleton in order to prepare for her impending death. Needless to say we were all devastated by this news.
Unfortunately Mom did not return to the clinic leaving us to assume the worst. We asked the DIF social worker to try and locate the family. In September, Ambar and Mom showed up at the clinic and it was an emotional reunion for all.
Ambar was asked to be part of a clinical trial using biologics treatment for her arthritis. As she said “What have I got to lose?” Well, for Ambar the news is all good. Her life has turned around, she looks great, her body is reacting positively to the new treatment. She says she has had to change her diet, no more processed food, only fresh fruits and vegetables. She smiles when she tells us that she is back in school with her friends and so far, life is great. Oh and by the way, she doesn’t need to use a wheelchair and the pain is almost gone.
As Director of the Jocotopec Clinic, thank you again for the opportunity of presenting some of our children to you. If you would like to learn more about Niños Incapacitados, please visit our website at www.programaniños.com or call Rich Petersen (376-765-5511) or Barb Corol (376-766-5452).