Today's guest blogger is Barbara Dittrich from Snappin' Ministries. Today is Rare Disease Day and Barb is the mother of two children who have rare diseases. Barbara and her organization are amazing advocates for the needs of the disabled. Snappin Ministries is a great resource and encouragement for parents of special needs children.
Gold and rubies abound, but lips that utter knowledge are a rare jewel.~ Proverbs 20:15,VOICE
WORLD RARE DISEASE DAY is February 29, 2016!
This has become an especially important observance to me over the years, as it should be to ALL of us. A "rare" disorder in the United States is any diagnosis affecting 200,000 people or fewer. It is estimated that there are 7,000 rare diseases affecting nearly 30 million Americans, two-thirds of whom are children. This means while a diagnosis may be rare, the impact is widespread. This also means that we ALL know one or more individuals affected by life with rare disease! My little family alone is living with 2 rare diagnoses – My son has Hemophilia A – Severe, a chronic bleeding disorder, and my youngest daughter has Erythema Multiforme, a severe reactionary allergy to penicillin. The ministry I lead serving special needs caregivers also caters to an enormous segment of those raising a child with a rare disorder. In fact, next to those raising a child on the autism spectrum, it is our second largest sub-group.
Because we parents raising kids with rare chronic illnesses, disabilities or diseases try to create a new "normal" in our households, we often make life look easy to the rest of the world. We also have to block out some of the incredibly shocking parts of raising a child with rare disease or we would go CRAZY. For instance, when I think about my son's hemophilia, one of the most shocking parts is that the cost of treatment each year runs close to $300,000 just for the medication alone. That doesn't include hospitalizations, different dental care, or other assorted specialized treatment.
Think about that for a moment with me...
THAT'S THE COST OF A REALLY NICE HOUSE EACH YEAR JUST TO SURVIVE!
There is an unusual "normal" we and many other families like us have created in our homes, administering an IV push in our homes multiple times weekly just so our child can carry on with simple daily life. Those IV's don't always go so well. Think about that. This is something we need to deal with before our children can even leave for school in the morning.
Then there is the constant low-laying fear of death that ominously sits in the back of our minds each day. It's not that we are even conscious that it's there, but it's always lurking, waiting to spring out at the slightest trigger. I joke about having PTSD every time I see the school district's phone number on Caller ID, but it's really no joke. We rare disease parents do live with that underlying fear that "this could be it."
I thought maybe I was a little crazy, a little "off" with that fear until I had my daughter with a rare diagnosis to the pediatrician recently. It was our usual doctor's day off, so we saw his partner. When we got there, she stated how grateful she was that my daughter with erythema multiforme did not need a prescription for any sort of antibiotic, because that scares the daylights out of her. REALLY? I'm not the only one? My DOCTORS feel this way too? You know that you are not being a drama queen or exaggerating when even your pediatricians know that these rare disease issues are life-or-death!
In fact, I'm really tired of the death part. We have an incredible dedicated prayer team for the ministry. I am SO heartbroken with the continual prayers we raise for the children who die too soon. It makes me sick that we lost Nick to his seizure disorder. My heart breaks that my friend, Mary, will never hold her Courtney again, see her smile, or hear her sweet laugh this side of heaven. I'm frustrated that the cancer part of WAGR Syndrome came back and took the life of Amy too soon. And just yesterday, precious Isaac left his family at the tender age of 4 years old after the effects of 9P Deletion took his life.
This, THIS is why I want you to CARE ABOUT RARE!
We need treatments. It makes me SICK that the federal government cannot pass a law legalizing use of CBD oil for medical purposes under the Orphan Drug Act. More children die because of it.
What's even worse, the infinite lack of compassion for families like mine never ceases to stun me. Some of us have managed to look so "normal," people have no concern for us, offer no simple acts of kindness, support or assistance. They have completely blocked out that every day could be our child's last day on earth. Others of us like Aria and Tahlia are in and out of the hospital way too often. People develop a certain "compassion fatigue" where they are less and less attentive to these precious families. Let it not be so, LORD!
WE NEED HELP! No matter how much of our children's treatment is covered by insurance or Medicaid, there are ALWAYS additional costs that are uncovered. Tax deductions for mileage hardly cover the cost of fuel and wear on our vehicles for all of those endless doctor's appointments and hospital stays. The out-of-pocket costs for specialized dental care alone would have bought our family multiple vacations by now. Our earning ability as parents is also challenged. With how much work we must miss because of medical emergencies, one parent typically must have part-time or flexible employment just to be a family caregiver, if they can even work at all.
On top of the financial piece, we never stop needing prayer support and emotional support. Be tender and loving. Simply ask how we and our children are doing. It helps to know that we have not suddenly become invisible. We know our lives are hard for you to handle. Imagine how hard they are for us! But we LOVE our children, just as you would if they were yours. So show some compassion, people. Don't let this year’s World Rare Disease Day leave you unchanged.
PRAY: LORD, we pray for all of those kids with rare diagnoses who have been promoted to heaven this past year. Comfort their loved ones in a special way on this Rare Disease Day. Please also bless all of those living with rare disorders, the doctors, researchers, and advocates. Open people's eyes in kindness towards this serious issue. Send them to be Your hands and feet to those who are struggling. In Jesus' Name we pray. Amen.
Barbara Dittrich is the mother of three children, two of whom have a variety of special needs, Barbara founded SNAPPIN’ MINISTRIES (Special Needs Parents Network) in 2002 and currently serves as its Executive Director. The organization she leads was one of three finalists for WORLD MAGAZINE’S Hope Award for Effective Compassion in October of 2009, in conjunction with the American Bible Society. With a unique vision for serving parents of children with special needs, she has led the SNAPPIN’ MINISTRIES team in developing an innovative parent mentor curriculum. She lives with her husband of 20+ years in Wisconsin and blogs at http://comfortinthemidstofchaos.blogspot.com