A Safe Space for Johanna

WHO WE ARE
Thank you for visiting our gofundme site!  We are Scott and Johanna Watkins, a young married couple who have been battling a life threatening illness which before diagnosis, we had never even heard of.  Johanna has a severe, progressive case of Mast Cell Disease which causes her body to develop life-threatening anaphylactic reactions to just about anything. She has a current list of over one hundred allergies, including many foods, scents, and various environmental triggers. She has experienced anaphylaxis and been hospitalized more times than we care to count. While we thought our lives couldn't get any trickier, a few months ago Johanna began to develop allergic reactions to the natural chemicals and body odors that people release.  Hence, although still happily married, we have been living in separate areas and are unable to be together.  At the moment, her body only tolerates the presence of her siblings, and they have bravely taken on the role of her hands-on caregivers.  There is no known cure for this disease, and its treatment is a complicated puzzle.  We are grateful to receive treatment through the University of MN hospital from Dr. Lawrence Afrin, one of the leading experts of the disease.  For two years, we have been trying various medications without success and recently under-went four rounds of chemotherapy in an attempt to stop her aggressive case.  Unfortunately, chemo was not enough to reign in her broken body, and we are still praying for a treatment that will heal her.  In the coming weeks and months, we will be trialing various medications, many which come with high risks and harsh side effects.  We are trusting her life into God's hands and believing in his promise to be our Shepherd and lead us "to springs of living water."

OUR NEED
For the past several months, we've made a temporary home in the home of Dan and Lucy Olson in Minneapolis. In order to stay alive and out of constant anaphylaxis, Johanna has been isolated to an upstairs bedroom, fitted with an air-lock and HEPA air filters. The Olson family has given up all in-home cooking and scented household products. Scott has been living in a basement bedroom. Due to the life-threatening nature of Johanna's illness and her unknown prognosis, it became clear at the start of the summer that we were in need of a safer, more permanent home. Unsure of how we would afford this purchase, we prayerfully walked forward in faith, and God answered in a big way. In less than a month from starting our home search, we were approved for a loan and bought a home which we will close on at the end of the month. But in order for Johanna to be able to live there, many changes need to be made. Especially in light of her upcoming med trials, we need help to turn this house into a safe living space that can help keep Johanna alive and as stable as possible.  


NECESSARY HOME RENOVATIONS TO MAKE IT SAFE FOR JOHANNA
To make the home fully safe for her and a place where others can take care of her, it will need to include three separate areas: a living space for Johanna that contains a one-of-a-kind air filtration system*, an allergen-free kitchen utilized only for the preparation of Johanna’s food, and a living space for Scott and any other care-givers while they are in the home.   The severity and life-threatening nature of her countless allergies require that all necessary installations be completed before she is moved into the home.

Money raised will be used to…
- Purchase a hospital-style Positive Pressure Air Filtration system*
- Seal the home so the Air Filtration system can work efficiently.
- Purchase and install special HEPA air filters throughout the home to further ensure indoor air quality.
- Overhaul the main floor kitchen to rid it of all allergens so that Johanna’s food can be safely prepared.
- Make necessary changes to the separate living spaces in the house for Scott and Johanna’s caregivers so they can prepare and eat food without risk of triggering Johanna's anaphylaxis (given that her entire list of tolerated foods including spices is less than 15, a safe eating space for Johanna's caregivers is a necessity).
- Abate toxic asbestos and seal off the unfinished basement to improve air quality near the air filtration system.
- Install a new washer and dryer free from cross-contamination of scented products and known allergens.
- Complete any additional repairs or changes that are discovered along the way and that must be done in order for the home to be sealed and safe for Johanna.


* A note about the Positive Pressure Air Filtration system:  Ryan Erickson, and his company, Erickson Builders and Company Inc., have graciously agreed to install the system in our home and provide complimentary labor for that process.  The air system is similar to one that would be found in a hospital, except that instead of pulling air out (negative pressure), it’s going to be pushing filtered air in (positive pressure).  A hospital has central filtered air, but as our home does not, a special device, called an air-scrubber, will be installed to filter indoor and outdoor air producing one of the most allergen-free air environments possible.  It is likely that no other home in the world has had a system like this installed, and without the help and expertise of Erickson Builders and Company Inc., we wouldn't have this opportunity to fit our home with a system that will help save Johanna's life.  Suffice it to say, our gratitude for this resource knows no bounds.  :)

THE TIMELINE
The sooner we can have a space made safe for Johanna, the better it will be for her health.  We are hoping to begin work in August and have them completed within one to two months.  After all installations are complete, the home will need to be aired out before Johanna can safely move in without risk of exposure to lingering chemicals and known allergens.  With all this in mind, we are praying big and are hoping to meet our gofundme goal by August 1, 2016.

WITH HUMBLE HEARTS
If you would have asked us five years ago what we thought our life would look like today, it would have included a description of Scott teaching at Hope Academy and of Johanna at home with our kids.  We had planned to save up for a home in the city where we could invest in our neighborhood and community.  But God changed all of our plans with the diagnosis of this disease.  While it's been a difficult journey filled with a lot of pain and dark valleys, God has showed us through His faithfulness, provision, and the support of others that His plans are better than ours.  We never expected to be in a position to ask for financial help or that such renovations would even be necessary for us to live safely in a home.  But we are clinging to the promise of Philippians 4:19,  "And my God will meet all your needs according to the riches of his glory in Christ Jesus,"  and are taking comfort in knowing that this earth is just our temporary home.

As we fight to take this assurance to heart and ponder the vastness of our present needs, we are reminded of a letter we received a few months ago from a Hope Academy fourth grader, Jesse Hoilien.  His closing address couldn’t be more timely as he ended with the words, “He who conquered the grave and is victorious and reigns on high, who went to the cross for yours and mines sin, is gonna move mountains, human mountains, for you Johanna.”  Renovating this home is a human mountain that without Christ and the help of human hands is currently impossible.  But with God’s mighty power through the generosity of others, this is a mountain that can be moved. In honor of one of our favorite pastimes before Johanna's diagnosis, we have named our giving levels with places that all reflect our love for hiking and hold special memories. As a small token of our immense gratitude, donors will receive a specially designed magnet with pictures relating to the title of the giving level and our journey with mast cell disease.

Please consider joining our campaign, spreading the word, and being a part of how God moves this human mountain for us.

With love and grateful hearts,

Scott and Johanna Watkins

 

Donations (0)

  • Sean Sweat 
    • $50 
    • 20 d
  • Doug Michelle Vanderveen 
    • $150 
    • 23 d
  • Anonymous 
    • $30 
    • 2 mos
  • Russell Kay 
    • $1,000 
    • 2 mos
  • Anonymous 
    • $20 
    • 4 mos

Organizer 

Scott Watkins 
Organizer
Minneapolis, MN
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