Siblings with Cystic Fibrosis
Did you know that there are some families that have more than one child with cystic fibrosis? We have served many families over the years who struggle to make ends meet while supporting two or more children in the same household. Both Maya and her big brother have cystic fibrosis ~ we were thrilled to be able to step in and offer their parents some much needed financial support.
Please describe how our financial grant program can best assist you in dealing with the additional costs of raising a child with cystic fibrosis.
“This program would help our family as we have 2 kids with cystic fibrosis. Our youngest who is almost a month old now has been in the hospital since birth for a procedure for a blocked bowel. Still is in the NICU and not sure when we will be discharged. With that, my husband who is self employed, has had to take lots of time off and that has been a huge stress for us and our family. I am on FMLA from work only receiving a percentage of my full pay. A financial grant would be a blessing to help us through this stressful time. “
Thank you to all of the donors that support our Extended Hospital Stay Grant program ~ we know how important this is to families like Maya’s.
Here’s a little more information for those of you that are wondering how a family can actually have more than one child with CF.
1. **Genetics**: Cystic fibrosis (CF) is an inherited genetic disorder caused by mutations in the CFTR gene. If both parents are carriers of the CF gene mutation, there is a 25% chance with each pregnancy that the child will have CF, a 50% chance that the child will be a carrier, and a 25% chance that the child will not have CF or be a carrier. This genetic inheritance pattern can result in multiple children in the same family having CF.
2. **Late Diagnosis**: Sometimes CF is diagnosed late due to various factors:
- **Mild Symptoms**: Some children may have milder symptoms that are not immediately recognized as CF.
- **Symptom Overlap**: Symptoms of CF can overlap with other common illnesses, leading to misdiagnosis or delayed diagnosis.
- **Lack of Awareness**: Parents and healthcare providers might not be fully aware of CF, particularly if there is no known family history of the disease.
- **Testing Limitations**: In some cases, newborn screening tests may not detect all cases of CF, especially if the mutations are rare or the symptoms are mild.
3. **Subsequent Diagnoses**: If one child in the family is diagnosed with CF, it often prompts testing of siblings, leading to the discovery that more than one child has the condition. This can happen even if the first child's diagnosis was delayed.
4. **Genetic Counseling**: Families with a history of CF or a diagnosed child may benefit from genetic counseling to understand their risk of having additional children with CF. Genetic counseling can provide information about carrier testing and reproductive options.
5. **Newborn Screening**: In many places, newborn screening for CF has become routine, which helps in early diagnosis and treatment. However, in regions or families where this is not the case, late diagnosis can still occur.
Overall, the combination of genetic inheritance and factors affecting the timing of diagnosis can result in multiple children in a family having cystic fibrosis.