Thank you for all that donated leave while I have been out of work caring for my daughter. ERC was started as a family company and this generosity shows we still are.
My daughter’s name is Sarah Catherine and she has Cystic Fibrosis (CF) and other complications. In the first 3 months of her life we have had 4 trips to Children’s Hospital in Birmingham, 2 visits to St Jude’s, 4 visits to Children’s Hospital of North Alabama, 4 pediatrician visits, 2 Emergency room visits and a 2 day stay in the Hospital. In that time her treatment has included 1080 pills, 420 breathing treatments, 240 chest physio therapy’s, 10+ blood draws and two IVs. Sarah is doing well in spite of all the setbacks. Her mother is a nurse practitioner but is limited to working part time due to Sarah’s care needs. I have previously worked as a paramedic, so we are knowledgeable about her care and condition, although we are sometimes overwhelmed like any other parents with a CF child. Our journey has just begun.
Children with Cystic Fibrosis with good medical care do not appear to be sick. The disease is strictly genetic with each parent being a carrier. Most parents are not aware that CF runs in their family as it is recessive in nature with a 25% occurrence from parents that are carriers. Sarah smiles, laughs, and coos, like any other 3 month old. Every day with her is a gift as with any child. Her disease is only affecting her digestive system at this point which is managed with digestive enzymes. The disease will eventually involve her lungs shorting her life span to between 20 and 30 years of age.
Occurrence of CF is 1 in 2500-3000. Nationwide testing of infants at birth began in 2008 providing early diagnoses and treatment. Testing of pregnant mothers or woman considering pregnancy for carrier status is not being promoted, although it is recommended by the ACOG, inexpensive, and covered by insurance. Occurrence of CF carriers is 1 in 800. If the prospective mother test positive for CF carrier status, then the prospective father is tested. If both prospective parents test positive for CF carrier status, an In-vitro fertilization procedure can be used to prevent passing the CF gene to the child. Carriers of CF may also suffer symptoms and may require treatment due to the progressive nature of the disease.
Thank you again for your generosity and ask for CF carrier testing if appropriate for you or your families’ situation.
Richard Joye, ERC, Huntsville, Al
The Mutual Rescue Project:
In the summer of 2015, the paths of Carol Novello and David Whitman crossed at a Bay Area café, thanks to their mutual colleague Sally Hazard Bourgoin. Their first conversation centered on the fascinating connections between animals and people, and subsequently sparked a new national initiative: Mutual Rescue.
People and Animals
Mutual Rescue’s purpose was to challenge a commonly held misconception about animal-welfare philanthropy—that gifts to animal shelters and rescue organizations reduce charitable giving to organizations benefiting people, and that the two causes are somehow mutually exclusive. Mutual Rescue aims to change the conversation from “people or animals” to “people and animals.”
Stories and Films
Through sharing authentic stories in film and print, Mutual Rescue presents compelling evidence that when people adopt animals, their own lives are often dramatically transformed in positive ways as well. Extrapolating that powerful dynamic, entire communities also benefit immensely through greater compassion for all beings.
Their newest film was just released today. Click on the link below to see the story of Josh & Scout: http://mutualrescue.org/films/