Sunday, February 26, 2012

We Need Winter at the Beach

This past week I got to meet Suzanne in person and hear her Momma's heart for her daughter. Suzanne is a writer for Homeschool Enrichment magazine and writes the homeschool humor column. Her daughter has a need though, that is no laughing matter. I asked her to share her story on my blog with the hopes that maybe one of my readers would have the first piece of information/lead needed to help Suzanne and her daughter. I call it "Operation Winter on the Beach." :) ~Maureen


The summer heat will be creeping into Florida over the next few months - or just showing up on the doorstep in April saying

"I'm here, ready or not!"


For many, summer means BBQ's and fun outdoor days; lazy rivers and flower gardens. For our 17-year old daughter, Winter Marie, summer heat has typically meant pain, itch, rash, multiplied medications, increased infection risk as well as an amplified potential for life-threatening reactions.

Since Winter turned one, she has had severe eczema and immune challenges. Rounds and rounds of medication, food and chemical testing, alternative meds and contemporary medicine have brought her to a baseline that we call "normal."

When the temperature rises, inflammation which continually burns under her top layers of skin - unseen to the outsider, but felt by her - rises to the surface.


The pain and itch intensify, the need to scratch begs in earnest.


Mediation by medication isn't enough. And the itchy pain becomes a scratched arm, face, legs. The scratches rise. The wound weeps. Infection waits its opportunity.

The past two summers Winter and her mother have spent the hottest three months staying at a Ronald McDonald House in Colorado, under doctors' recommendation. Living life housebound for nearly half the years of her life is no longer a healthy option, when there are others.


This summer, Winter's team of doctors, from Duke University Medical Center (Durham, NC), National Jewish Health (Denver, CO) and locally in (Jacksonville, FL) recommend, due to new-to-her treatments we are testing, that we find a summer location on the beach so she can try being outside in the heat, along with the health benefits of sun and salt water.



In conjunction with her new medical routines, they are hoping this environment will give her a good testing ground before subjecting her to inland summer heat and humidity.


Some things we must consider, for medical purposes:


  • fire station/ambulance available in 20 min or less
  • within 20 minutes ambulance drive to hospital
  • on the beach or walking distance to the beach (Mom’s health prevents her from driving)
  • pet-free room
  • room with a tub
  • air-conditioning
  • grocery store (and a pharmacy) w/i walking distance, or transportation available (public or otherwise)
  • access to cooking facilities (simple is fine)
  • internet access (WiFi preferred) for family/church/friend support


WE NEED YOUR HELP!

Do you know of a place we can stay? Or have friends, family, business associates who might be able to help? Here are some possible locations:

North Carolina
Bodie Island
Hatteras Island
Roanoke Island

South Carolina
Myrtle Beach
Hilton Head
Kiawah Island
Surfside Beach
Pawleys Island

Georgia
Jekyl Island
St Simons Island
Tybee Island

Florida
Jacksonville Beach
Amelia Island
St Augustine
Ponte Vedra
Neptune Beach
Fernandina Beach


If you have leads we can follow, please email Suzanne, the mama, suzmom at msn dot com or contact Suzanne on Facebook.

I don't know how it will work out, but God does ...

will you pray with us? for us? 

Labels: ,

12 Comments:

Blogger Mandy said...

How about Lewes, DE. There I in hospital in Lewes, definitely grocery stores, and public transportation. We live about 45 minutes inland from the beach, but I'm wondering if there are any churches that could help?

February 26, 2012 at 4:10 PM  
Blogger Tracy said...

Oh my. I'm not sure. But if I had my way we'd live in Florence, Ky. Its beautiful there and everything is within walking or driving distance. We stayed at the Paddock Inn one time when we traveled to Cincinnati ( its in Florence, Ky). I fell in love with it as soon as we got there. Is about a 20 minute drive to Children's in Cincinnati, I"m not sure where the fire department was because we didn't go to far out of our comfort zone. But there were about three pharmacies within walking distance where we were staying. Cincinnati is an awesome hospital and they do have a great Immunology, Allergy, Eosinophilic disorder clinic. Bar to none. I know MANY families with children with severe allergies that go to Cincinnati, Ohio. Granted there isn't a beach. But if you try to hard to look for that perfect place , your just not going to find it and will get disappointed.

February 26, 2012 at 4:28 PM  
Blogger Rhonda said...

Have you considered registering with

http://www.christian-housesitters.com

or

http://www.housesittersamerica.com

You can help someone else while they also help you!! Will be praying the Lord leads you to the right situation!!

February 26, 2012 at 4:32 PM  
Blogger Carrie said...

Have you checked Indian River Plantation area on Hutchinson Island, FL? It is beautiful there!

February 26, 2012 at 4:54 PM  
Anonymous Nancy @Real Food, Allergy Free said...

I know exactly what you are going through. We are heading to NJH this spring. I don't know how we are going to pay for it. The beach has always been good for my daughter. I wish I could help you find a place but I will certainly pray for you.

February 26, 2012 at 5:17 PM  
Blogger Aurie{OurGoodLife} said...

Oh my!! We live in inland NJ, but I will be praying for you and your daughter during this medical transition.

February 26, 2012 at 8:59 PM  
Anonymous Suzanne said...

Thank you so much for ideas! What a process, what a good God!

February 27, 2012 at 10:47 AM  
Anonymous Suzanne said...

Hadn't heard of them ... Will check into it! Thank you so much!

February 27, 2012 at 10:49 AM  
Anonymous Suzanne said...

Oh Hutchinson Island is GORGEOUS! We stayed there with my sister one year. Wow, wouldn't that be amazing?!

February 27, 2012 at 10:50 AM  
Anonymous Suzanne said...

Oh Nancy, how it breaks my heart to hear of others going through the same pain ... both the child-patient and the mama-heart. NJH was very very helpful. Not a cure, but a management system and hopefully enough to keep her closer to home this summer.

Check with NJH's financial office - they have several options. Also check with your state/county Children's Medical Services dept. Sometimes they can help, too. <3

February 27, 2012 at 10:52 AM  
Anonymous Suzanne said...

Thank you for your prayers, Aurie. I am overwhelmed at the goodness of God in the land of the living. <3

February 27, 2012 at 10:53 AM  
Blogger Maggie Hogan said...

Pretty strict criteria from the doctors about the salt air. It isn't Suzanne being picky as much as she is just laying out what she has done and has been told to do next. And because she can't drive that is a limitation and because they don't have money to just rent a place close to the beach for the summer that is another limitation, but GOD is bigger than our limitations! So please join us in prayer that He will put Winter right where she belongs next summer, thank you! Maggie

February 27, 2012 at 3:55 PM  

Post a Comment

Thanks for letting me know you were here! :) I appreciate you taking the time to write. If you have any questions, I'll try to answer it in the comments section here or via email if it is listed in your profile.

Subscribe to Post Comments [Atom]

<< Home