BellaOnline Forums Family Special Needs Children Cystic Fibrosis, was My Niece has SMA

[quote=SNC_Editor_Pam]
Information about Cystic Fibrosis
at the Family Village Website:
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Mmm. You probably have noticed by now that I'm CF (child free) and I have many reasons for being so. One of which is that it's selfish to bring a new child into this world when first off there's so many that don't have homes and are unwanted, another is this world is grossly overpopulated. I understand that some people really REALLY want to have a child "of our own" (although that speaks of the ego to me and not what's best for the child). I think that if you knowingly reproduce when there's a fair chance that your child will inherit a lethal disease, it's on YOUR head and no one else's.
I hear so many people say "I'd never wish _____ on my worst enemy", yet they go ahead and have kids when they know they have that thing they dread. So, you wouldn't wish an enemy to have the pain you carry, but would blithely give it to your child?! That is just...Insane.
Do I wish my niece and cousin's kid to be killed because they have genetic diseases? Of COURSE not! They're wonderful kids, and do NOT DESERVE THE PAIN THEY'RE IN. If there was a way for the doctors to take healthy cells from me and plug them into those kids, I'd do it in an instant. But if I thought that my brother and his wife knew that they were carriers for SMA and had kids anyway, I'd blame THEM for her pain. You should not play the lottery with human lives, it's repulsive to just "hope that everything turns out o.k.".
I think it's also irresponsible to have a child that has a good chance of exhibiting a genetic disease on the mere hope that science will advance enough to treat them. Say there IS a therapy, but it's hideously painful? When do you say "It is wrong for me to even think of putting a child through a life like this." It is a kindness to not put children through a life of hospitals and illness and pain and so on. Life is not easy to begin with, why would you want to give your child an even greater disadvantage?
I come back to the core of my argument, which is why would someone purposefully bring a child who may have a life of pain through no fault of their own when there are billions of children that need to be rescued RIGHT NOW. What is so important about YOUR (not you specifically) genes that they need to be spread?

It seems that this conversation has gotten a bit far afield of the topic. Of course, as a mother, advocate, and editor of the Special Needs Children website at BellaOnline.com, I am more aware of the arguments that children with disabilities live lives of pain and suffering and the only way to prevent this pain and suffering is to plan in advance to prevent them from coming into the world.

Children with disabilities have the right to live in the world; this is a truth that will not be debated here.

They develop, grow and learn, enjoy life, and contribute to their communities and families just like everyone else.

Because they live, I believe we have more compassion for children in our communities and around the world who have their own struggles, and their own needs for us to be advocates and caregivers for all of them.

Children who you might recognize as ordinary, mainstream, and not diagnosed with anything at all, also have their own special needs, including the need for us to consider them with interest and compassion. They often hide their pain and suffering so that they are not judged more harshly than they feel they would be if they allowed both their differences and their 'acceptable' qualities - including being typical - to show.

This is a forum for families of children with special needs to find information, resources and support as we raise our children with disabilities, and their equally precious mainstream sisters and brothers. I believe we have provided links that are helpful in that way. This is not a forum for debate on whether our children are welcome in the world, for whatever reason. We welcome them, we celebrate them, and we chose to hope that children like them will continue to be brought into the world.

And of course, we will work for treatments and cures for the conditions that create such challenges in their lives, just as we fight against the prejudice, misinformation, and delusions that so often create greater challenges than a diagnosis.

Pam W
SE of Seattle

Advocating for Children with Special Needs
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So sorry to hear about your niece, but I would definitely encourage her family and anyone helping her through it to join this online Cystic Fibrosis community dedicated to questions, answers and open-mindedness. It's through a great health search engine called Healia. It's kinda nice to run health questions by peers before going to docs, etc.

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Thank you for the link for family support for Cystic Fibrosis. The Children with Diabetes website has similar email support groups for families and individuals with insulin dependent diabetes, and is very helpful for suggesting questions to ask at the specialist's office, and their experience with different health issues specific to their own children.

Pam W
SE of Seattle

Medical College of Wisconsin Health Link
The Facts about Cystic Fibrosis
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Of course. I am really happy with the Healia site, especially with the range of health topics discussed. It's good to have specific ones since we all have such individual needs and questions, and sometimes it's best to clear it up with peers/experts online first.

I'm often surprised to read that other moms think they are the only ones with a specific question, or feel they are the only ones on an emotional roller coaster, etc.

Also, it's great to have other families as online resources so we know that medical professionals may have gaps in their experience or training, and of course to offer gentle corrections when we 'hear' something wrong at a parent group meeting, or conference, or at a medical visit.

Online support and information is also helpful because we can stay home and connect, and find one another in the middle of the night.

Pam W
SE of Seattle

Asking More from Medical Professionals
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You are so right, Pam, and it's web editors like you and the great medical professionals at Healia that make me want to be even more interactive on the site!