As salamu alaikum brother,

 

I am sorry to hear about the skin condition that your two daughters have. As I did not know much about it, I did look it up and it is an autosomal dominant pattern disorder. This means that it is an inherited genetic disease and it is not contagious.

 

Brother this is not a curse, this is not a result of something that you have done in the past that was bad, this is something that was genetically created. As we are imperfect human beings, we do have defects. Some are more apparent and severe than others. There are many types of genetic defects such as tay-sachs, sickle cell anemia and many others. Just because one is afflicted with a genetic disorder does not mean they are a bad person, or that it is a punishment from Allah because they have done something wrong. It is just a human condition.

 

Education

 

I would kindly suggest brother, that insha’Allah you read as much as you can about Epidermolysis bullosa if you have not already. I am sure that you’ve read a lot and learned a lot, however, insha’Allah I ask that you be well versed about this skin disorder so that you may educate others. Education is the best way to combat ignorance. Those that are telling you that this is an exam from Allah and that this is a result of doing bad things in the past, clearly do not have a medical background or even the insight to understand what this rare skin disorder is truly about.

 

It is sad and hurtful when people accuse, judge, and condemned without having any intellectual knowledge about the circumstances. However, by you knowing how to respond and teaching them that none of us are perfect, certainly, they are not either -will help insha’Allah. The goal will be to reduce the rampant ignorance and cruelty surrounding your children’s conditions. By confronting these people with known medical information concerning your daughter’s disorders, this will insha’Allah greatly reduce the chance that they may be targeted when they get older with the same abuse that you are enduring.

 

Brother, when someone is diagnosed with cancer, diabetes or when a child is born with Down Syndrome, people don’t usually say these things. I encourage you to please insha’Allah, be the message of truth who advocates for your daughters’ and educates the ignorant about your daughters’ condition. There is nothing wrong with responding to accusations and cruelty with an educated answer.

 

It is my feeling that when you do these people will back off. If they don’t, you can walk away or cut them out of your lives if they’re not your parents. You have two beautiful daughters that Allah blessed you with. Despite them having Epidermolysis bullosa, they are from Allah and Allah swt does not make mistakes. While they may need extra care and they may have special needs for their skin, it is no different than others who have illnesses, diseases or are differently abled. While it is a challenge, it is not meant to be something that is considered deviant or the result of behavior.

 

Our Sins are Ours

 

We all sin and we all carry the results of our sins with us unless we repent. When we meet Allah on Judgment Day, there will be nobody next to us carrying these things for us, it will only be us alone. Therefore based on this, you can see how far off people are in their ridicule and judgment of you and your daughters.

 

Your children are not a punishment. Your children are blessings. Insha’Allah, the condition that your daughters have will challenge you to be more assertive with others in regards to education, Islamic principles, love, mercy and adab. We wish you and your family the best, you are in our prayers.