A Safe Space for Johanna
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."
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 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
Although much has changed in our caregiving situation, the house has remained a one-of-the-kind space. There is no other place safer for my lovely wife. Her health is much more stable than when we had first moved in, and life-threatening daily triggers have been greatly reduced because of the resources you provided! I have now started caring for Johanna full-time, and had to leave my job to provide care in the absence of available others. This has been extra tricky because of Johanna’s allergic sensitivity to people, especially me! I keep a personal caregiving website updated bi-monthly which provides updates on Johanna's health. It's at www.caringbridge.com/visit/JohannaWatkins We invite you to follow our story as Johanna battles a singularly nefarious form of Mast Cell Activation Syndrome.
Although the house you made possible has not changed (and thank goodness!), we have changed greatly. As we have walked through this great suffering for so long we have experienced God’s presence with us. He has borne us through many trials and seasons. I also want to invite you to join me over at my personal blog, www.WalkingwiththeWatkins.com ,where I plan to write weekly, sharing with family, friends, and anyone interested about our singular, strange life.
So you can see a little of what has been made possible by your generosity, I have attached pictures, each of which show you one of the many unique spaces you have made possible in our house. We remain thankful to God for you all, and hope you are encouraged as you visit our CaringBridge and my personal blog, Walking with the Watkins.
- The Kitchen Photo is me and good friend, Nate, cooking for Johanna
- The photo with the strange tubes is Johanna's air space, where our extreme filtration and cooling happen (in the Summer)
- The final photo is the upstairs caregiver living room, created out of a small attic space, where I spend the majority of my time! We have some great toys for when my nieces come over :).
Three 'Hellos' for the five months (!!) some of you have been waiting to hear how our 'Safe Space' has been working, and how Johanna is doing.
About a week ago, and frequently every week, I was sitting upstairs and thinking as I looked around. I felt a wave of thankfulness and even disbelief at all that was around, above, and below me. I had just come from finishing a meal for Johanna in the very special kitchen we (You!) had built. A kitchen that has worked beautifully in our need to prepare food in a totally sanitary environment. I was sitting in our upstairs, complete with it's own kitchen and bathroom and looking at the beautiful work had been done all around me. Below me slept my beautiful wife, Johanna, in a space that is truly beautiful and homey, but whose inner workings would be more at home in a hospital. Wow, wow, wow! I got on my knees and thanked God for all of you and his provision for us in this time. In fact, even as I write this update I am sitting at my desk in my bedroom upstairs, all of which wouldn't be happening if you hadn't been a part of this 'Safe Space'. I am truly silenced by the gravity of your generosity to us. Thank you thank you thank you.
A resounding YES to the question of whether this home is truly a 'Safe Space'. Yes, it really is a safe space for Johanna. We have troubleshooted the positive pressure air system in a few ways over these past few months, including adding an air return while she was gone at the hospital, putting an upstream filtration system on incoming air, and a cooling system that keeps Johanna's space cooler in the Summer. All of these have made the air system even safer, in a way that is truly unique and one-of-a-kind. I can say with a whole heart that this house is probably the safest place possible for Johanna in the time of her great need. While her disease continues on, the intricate workings of our house keep her body as safe as it can be. That sentence really should be '...the intricate workings of [y]our house....' This is possible because of you.
Johanna has been able to sleep less interrupted since the light-blocking shutters and screens have been installed, and the positive-pressure air system is working better than ever.
Johanna and I both believe she would not be alive today if it had not been for this safe space. For those of you curious on how Johanna's health is, please visit our Caringbridge, at www.caringbridge.com/visit/Johannawatkins
There you can find many details about her health, and other particulars about us.
The only system we have yet to install is the generator/battery back-up system in case of electrical outage. Thankfully the power has been consistent for our time here so far, but we do hope to have a way to keep the life-saving system working in the event of a power outage.
We remain so wholly thankful for your support, your immense support, in our great need! We thank God for you all!
Scott and Johanna Watkins
P.S. Sorry this update was posted twice!
We have moved in! We are glad to be at our home. Our home which has been totally provided for by the gifts and sacrifices of you, our friends, families, and even total strangers. Thank you! Thank you! Thank you! Mountains have been moved to get us here. Mountains moved by you. Though we've avoided the emergency room, it has not been an easy transition and we are hanging in there. Feel free to visit our caringbridge for more information. www.caringbridge.com/visit/johannawatkins
In the final two weeks we dissassembled and reassembled the positive pressure system, added a filter system throughout the house, created an airlock to control pressure changes, built a separate air chamber in the basement, deep cleaned the whole house multiple times, re-wired Johanna's space, re-plumbed multiple sinks, and purchased and installed hundreds of air filters. It came down to the final minute. It's all working, but we need to make some long-term adjustments. I've listed them below
-Even though we have 30 times the filtration of a room air purifier, small traces of scents have been detected passing through the system. We're going to bump up to 50 times the filtration.
- Johanna's new space has more windows than her old one and even with blinds has had trouble with daily living (sunlight aggravates her disease). We'll be getting some special shutters to have more control over sunlight. This will also improve summer temperatures in her space.
- The positive pressure system depends on Johanna, and Johanna depends on the pressure system. We're hoping to get a back up generator which could power her space and kitchen in the event of a power outage.
- A portion of the basement involved in Johanna's air system is unheated, un-cooled, and un-humidified. It's at the mercy of the surrounding ground and outside. We are looking to install devices which can control incoming air temperatures and humidity before entering Johanna's space.
As you know, each these systems require funding. We have raised our GoFundMe goal to match their costs.
As always, we are trusting God to hold us up at this time. Thank you for your prayers and generous support.
P.S. This is the best shot I have for now! You can just barely see Johanna in her safe space, and myself in the airlock. More to come!
Thank you to everyone who has been following our journey with this house. Many hands have made our need for a safe living space for Johanna become a reality, and we don't know where to begin to express our thanks.
After five months of work on the house to make it into a safe space, we are almost ready to start moving things in. Yay!
The past month has been an extra rough time for us due to Johanna's health. The details are complicated (and a summary can be found on our caring bridge site, www.caringbridge.com/visit/JohannaWatkins). The short version is that we've been in a daily survival mode and Johanna's body is in an extra weak and poor state.
The move-in will much more complicated than a move would typically be. We will need to move furniture and certain items into the home in stages, and then let them "off-gas" until the fewest scents and odors remain. We are being extra careful of the smells that could be inadvertently introduced to the positive pressure system. The move will happen in stages because of Johanna's countless allergies, and we won't move Johanna there until everything is ready.
In the next few weeks we will be looking for help with moving, unpacking, and lots of cleaning. Please contact me if you would like to help.
We also have some house items we are looking to get rid of that were previously in the home but can't stay due to Johanna's allergies. These include a stove, refrigerator, claw-foot tub, washer, and dryer. Contact me if you're interested.
This past weekend the first piece of furniture was moved into the house-a couch in the upstairs space! It was a surreal moment, and is a reminder and testimony to all the help, love, and blessings we have received from so many.
Thank you for all the donations that have continued to come in. All extra funds will be donated to the Summerall & Klein Fund for Mast Cell Disease Research and Education.
With MANY Thanks,
Scott, PLEASE check out www.retrainingthebrain.com There are others who have had the same issues as your wife who have recovered. I know it seems nuts (I've been there) but the science behind neuroplasticity is sound. This program gave me my life back. Good luck.
A person below mentioned Say Goodbye to illness. It is about a technique called NAET that helps eliminate sensitivities. I too have MCAS and run a group with over 4K people. I too was sensitive to everything, lost all foods and ended up in the hospital on nothing but a sugar drip for weeks because I couldn't even tolerate the elemental formula of last resort. The temperature change from going inside to outside would send me into anaphylaxis. I would go into ana just upon waking up in the morning. There are other ways to treat MCAS that Afrin and other mast cell docs don't know about yet. NAET, cranial sacral therapy, neural retraining and other, non-invasive therapies are going to need to be where you need to start in order to calm that heightened inflammatory state in your body. Are you on Facebook at all? I'd love to talk to you further.
I just at this very moment finished reading the story about your condition and I was deeply touched on so many levels. I was hurt and saddened but also inspired and hopeful. I cannot begin to express how courageous and strong I believe you both are in this trying situation. The love that you have for one another shows how love truly conquers all. I will have a special place for you in my heart and in my prayers. I can only dream of being the inspiration that I see you as. Thank you for using such a heart wrenching situation and turning it into hope, strength, positivity and lighting the path of life when it seems so dark. You are a true example to others of how to endure with love and faith. There is not a word in existence that can describe the hero you are. You are giving encouragement to so many others that are struggling thru life's problems..and for that I want to thank you. God makes everyone by his hand and you are definately a work of art Johanna. Thank you for your perseverance through out your trials and tribulations. Thank you for sharing your story.
I second MJ Pond's advice to check out that website. It is a course called the Dynamic Neural Retraining System. It's for people whose Limbic System has gone awry and is telling the body to react to all sorts of things that shouldn't be harmful such as smells, food, chemicals, perfume, and other things that seem normal to most of us. People end up in the emergency room with rashes, breathing problems, anaphylactic shock, lung deterioration, etc. I am also very familiar with NAET and I have had that help me with chemical sensitivity, perfume, car exhaust and my husband has had it help him with food issues. There are things out there that I know sound strange but when you get to the end of your rope it is worth trying. Don't give up
Johanna. This might be too simplistic but I've discovered a book by an author called Nambudripad that describes your symptoms to the T. I must admit reading it is hard for me because I'm not familiar with alternative medicines, but I have seen 2 cases first hand of how this technique heals allergies. I'm not someone to comment online but this is just too important not too. The book is called Say goodbye to Illness by dr Devi Nambudripad. Please forgive this unsolicited advise. I pray for complete healing for you.
So sorry to hear of your struggle. Saw a few recent posts recommending NAET. I have been following this treatment protocol for 3 years and it has totally given me my life back. I had some autoimmune issues for years--chronic insomnia, extreme fatigue episodes, and multiple chemical sensitivities. Exposure to black mold 4.5 years ago dramatically increased the number and severity of my allergies and I developed many food sensitivities as well. For 15 months my energy and mobility as well as brain function were severely limited--I basically went from 33 feeling 23 and very athletic to feeling 83 in the matter of a few weeks. It's taken several years to get full function back and I still have the occasional flare-up/relapse but thanks to NAET I went from not being able to walk down stairs or move at more than 1 mph, to being able to summit Mt. Adams (2nd-highest volcano in WA), in only a year and a half.
I sent a private email also. Please look into NAET ( allergy elimination) and the book Say Goodbye to Illness by Devi S Nambudripad and look specifically at the section about being allergic to others. I see a wonderful Christian lady in Buffalo mn at a clinic called living allergy free. She herself was severely allergic to so much stuff and now has her own practice where she eliminates people of their allergies! She trained under the author of the book I listed above who is also (Devi) the person who developed the treatment. No medications required and the office visits are reasonably priced! It is amazing!
I saw your story on Facebook. Look into Naet. It's a natural medicine that works it stands for National allergy elimination technique. There's a woman in San Diego that does it Jill nahama and it really works. May seem crazy but I'd look into it if I were you. I'm sure there is someone who does it closer to your area as well. Just a suggestion.
I heard your story on BBC World. A friend's daughter has mast cell activation syndrome. She is only 2 years old and has only 3 'safe' foods ( and by safe I mean they are the foods she reacts to the least). She too reacts to chemicals around her. Did you have this disease as a child or was it an adult onset case?
I just scrolled down and read Heidi Johnsen's post. The woman she recommended is the same treatment that was used to help me. I was at the end of my rope because my list of allergies and food intolerances was growing by the week & modern medicine couldn't help me. Who knows? It's worth a try at this point. https://www.naet.com/Patients/whatsnaet.aspx Good luck!
I was in a very similar place, and fully recovered doing a combination of the neural retraining and EFT to reprogram my nervous system. Took me about a year, but I'm completely symptom free and help others through the process now. Best wishes to you guys!
I second the neural retraining. I did Annie Hopper's program combined with an amazing EFT lady and completely reversed a very similar set of symptoms and severe reactions. Would be happy to talk further. It's not the chemicals themselves. It's the body's perception of them, and you have to retrain that at the nervous system level. Again, would be more than happy to jump on a phone call. It's a brain injury. I was 75% symptom free after six months, and 95% symptom free after about a year. The body creates a vicious trauma loop of fear and inflammation that you have to break out of. God bless!
My heart melts for you. I can imagine what you are going through, I also at some point considered that I am allergic to my husband as well. Please look into a medicine called LDN (Low dose Naltrexone). It might give you your life back. I'm on it for about 2 months and it has helped a great deal in getting my immune system stronger
Hi Scott and Johanna! Do you have an email address where I can send clinical research that might help you? Thanks!
Hi, Maybe this could help getting back to a normal life. I've seen a documentary where the doctor went in Africa to help and in a specific village they noticed that nearly everyone had worms. They treated them and worms ...suddenly they started to be allergic to many things. In his observation he noticed that only people teated for worms had this. What they did was take a culture of these worms and had eggs in a sirup they gave to the ones having allergies. It stoped in a matter of a day or two. The time for worms to develop. They selected another group of people and went through the same process. Result: same reactions and they also had allergies. They gave them also the "worm eggs syrup" ... result: no more allergies after the incubation time. The point was that these worms produced a substance that acted to stop this process that causes allergies. The doctor then remembered a patient he had in USA, a woman that was allergic to so many things that she was very sick and was like waiting die. He could not say, "i can't try that because she will have worms and it's gross"... No! On his return he contacted his patient and talked about that. She said, better have little worms and have a life than what I'm living now. She gave it a try. According to the documentary. She had a full recovery and no more allergies. If you want to search for that, it was a documentary on parasites that change the behaviour on their environment to continue their life circle. You can contact me if you want further information on this. May Jesus-Christ my God may hear your prayers to save your soul and heal your body.
Scott! I am so glad!! I donated a couple years ago and I am thrilled. this gives me so much joy
Hello is there anyway I can talk to you on facebook my daughter who is 28 has the same thing you have doctors give her a hard time saying no one can be allergic to everything she also has diabetes and lupus , mast cell disease she gets her insulin and goes into shock everytime and now she can eat anything so she is growing weak and getting brain fog she can take meds causes of her allergies and kidney failure the doctors will not even put her on kidney trans plant list cuz of her allergies please give us advice my prayers are with you