I’m so excited to add a post in my Helping the Least series. I haven’t done one in a while, and I feel very remiss in my efforts to spotlight groups and individuals who work under the radar assisting those in need.
Many small nonprofits grow from an individual or family’s desire to make a difference. The desire is often born from a challenge or experience they, themselves, have faced. Because these people know the real circumstances, they are uniquely equipped to offer the help to others facing similar situations.
Such is the case with today’s featured family and organization. Jeff and Kate Estes have a beautiful family and an inspiring story of faith and commitment. Their son, Noah, has faced numerous medical emergencies related to several birth and genetic defects. In the midst of their own financial struggles, typical of any family facing enormous medical bills, they chose to give more than they receive and setup a nonprofit organization to help families of other critically-ill children. While juggling doctor appointment, medical care, homeschooling, work, and a gazillion other things, they raise money, purchase supplies, and mail gifts to families just like them. Amazing.
I’ll let them tell you their story. So, take it away Kate…
Tell me about yourself and your family.
I’m a homeschooling mom of 8 awesome children ranging from 5 to 20 years old and wife of 22 years to my husband, Jeff. Between teaching the children and caring for Noah’s medical needs, my days are pretty full, but I enjoy reading, going on dates with Jeff, and playing around with new recipes when I get some extra time. Jeff had a great career as an Organization Development Manager of a local iron foundry, but the foundry closed after a buy-out. He now works as an industrial trainer through our state college, but this is only part time work at this point.
Our children are all lively, happy, and fun to be with. Life is never dull with this crew around all of the time! You can read more about each of us at http://www.prayingfornoah.com/p/our-family.html.
All your kids are special, but Noah is extra-special, I hear. Tell me about him and his situation.
Noah was born with three significant health issues.
First, he has an ASD (hole in his heart). We had hoped it would close on its own, but it has not. This will not be surgically corrected because he’s simply too fragile.
Second, he was born with a severe, atypical mal-rotation of all of his gut organs. This was improved with major surgery but is not correctable.
While these may seem like major issues, his biggest challenge by far has been the third one – a teeny genetic defect causing Mitochondrial Enecephalomyopathy, a progressive, incurable disease. At this point, his “mito” (for short) has affected almost every part of his body. He has lost the ability to walk and the ability to eat. His vision, digestive system, lungs, heart, liver, immune system, bone marrow, bladder, muscles, and joints have all been affected significantly. He has no use of his digestive organs at all. He gets all of his nutrition and medications through IV lines that run into a large central line that goes to his heart. He has at least 4 IV pumps running at all times and gets dozens of doses of IV meds daily. He deals with very significant pain and gets individual doses of IV pain meds as well as a continuous drip of IV pain meds. Over the seven years of his life he has gone from a fairly healthy-looking infant to an extremely sick and fragile child.
In spite of his medical challenges, Noah is a smart, funny, happy child. He’s got an awesome sense of humor, and is crazy about Legos, dragons, octopuses, and Angry Birds! He is incredibly loving and very spiritually aware of the Lord’s love and provision for him.
While Noah’s healthcare needs have obviously been a challenge, I know he’s been the source of many blessings. What have you learned about God through your journey?
I could write a book (and maybe I will one day!) about the ways that this journey has blessed us. I used to pray for other mothers with seriously ill children and would tell God over and over that I could never ever survive even thinking that I would lose one of my children. When I learned that my precious little toddler had a disease that was not survivable, I was surprised that somehow I managed to keep breathing and walking and waking up each day. My world had been shaken, but my God hadn’t. The stability we’ve found in Him has been essential to our family’s ability not just to survive, but to truly live.
I’d say that there have been three main spiritual crossroads I’ve personally faced in Noah’s life. The first was dealing with anger toward God. I remember standing by yet another stretcher in yet another emergency room while my tiny baby screamed in pain and terror while doctors performed necessary but painful procedures on him. I was just so furious that the Lord was allowing this, and I remember actually telling him to “go pick on somebody your own size!” I could grasp that I personally needed to go through trials at times for my own edification or to bring glory to God, but I informed Him, in no uncertain terms, that He was out of bounds for allowing my helpless son to suffer this way. After all, Noah was far too tiny to learn from this or to glorify God. It all just seemed so pointless.
I stayed angry for several days until that Sunday when it came time to take communion. I’d always related best to the person of Christ as opposed to other parts of the Trinity, but that Sunday I realized that God the Father had, like me, stood by helpless while His son suffered – and that He had done it for ME! I had never really viewed God as a fellow parent Who knew what it was like for His Son to suffer that way, and it was incredibly comforting and convicting. I was very humbled by my own foolish anger, and I can honestly say that the anger was resolved once and forever at that moment.
The second crossroads came one night as I raced to get ready to take Noah back to the hospital AGAIN after only having had a day or two at home. For the first five years of his life he and I essentially lived in an out-of-town hospital with only very short trips back home before he’d be admitted again. I was so tired and so concerned and so homesick that night and couldn’t believe that Noah was sick and being admitted AGAIN. In my frustration, I remember calling out to God and asking WHY this was happening and WHY Noah couldn’t just be healed. I think I probably hit Him with about a zillion WHY questions because it all just seemed so incredibly unfair to me. As I rushed around packing and crying, He answered so very clearly and told me I didn’t need to know why – I just needed to know the One who DID know why. I was deeply struck by this, and in the years since I’ve found great peace in adhering to it.
The key isn’t in trying to figure out why something like this happens; rather it’s in getting to know more and more about who God really is on a deep level. As I’ve gotten to see more and more of His true character, I’ve chosen to walk in the truth of who He is and what He says rather than being buffeted by emotions. That’s not to say that the emotions aren’t there (pain and fear and sorrow are very real) but that I choose not to walk in those things. For example, I was deeply sad to learn recently that Noah’s mito had started to significantly impact his vision, but I chose to walk in the truth that God loves Noah even more than I do, that Noah is functioning incredibly well despite the vision issues, and that there will be true healing for Noah one day in eternity. This kept the sorrow from being crippling, turning into bitterness, or being something that caused me to “act out” in negative ways.
The third crossroad came in relation God’s faithfulness to work through me when I’m too weak. For years I would cry all of the way home from the hospital when Noah would be discharged with some new therapy or piece of equipment. I don’t have any formal medical training and I’d be truly convinced that I was not going to be able to care for him and that I’d end up hurting him somehow. Over time I began to see that the challenges that had once terrified me now seemed like nothing in comparison to whatever new challenge we were facing. When he lost the ability to eat or use his gut at all and had to be switched to all I.V. medications a couple of years ago, it was several days before it hit me that I hadn’t had my standard “I’m so scared and I can’t do this” mini-meltdown. God’s unwavering faithfulness and empowerment had sunk in gradually (yes, I’m a pretty slow learner) and I had finally reached the place that I could stand confidently knowing He’d been faithful before and would always continue to be faithful no matter how great the challenges.
Here is an article I wrote several months ago detailing some of the other lessons I’ve learned along the way and that I wish I could share with my self from seven years ago: http://www.prayingfornoah.com/2013/07/dear-kate-back-then.html
Any critical/chronic healthcare issue usually causes financial difficulties for the family. Coupled with Noah’s specific needs, I know you have a critical need for transportation. Can you tell us the situation and how people can help?
Noah lost his ability to walk years ago and lost the ability to even roll a manual wheelchair about a little over a year ago. He is now in a power wheelchair, and the only way to transport him is in a vehicle equipped with a power lift and wheelchair tie-downs. Because of Noah’s size (he’s gained a great deal of weight because of adrenal failure), his inability to even stand for a moment, and the overwhelming number of IV lines, pumps, and drains, it’s just not possible to lift him out of his chair and put him in a car seat.
Jeff and I have a deep commitment to Noah’s quality of life. I mentioned earlier that Noah and I spent the first 5 years of his life living in hospitals most of the time. Almost two years ago we sat down with our doctor and discussed how significantly Noah’s disease was progressing and how much baseline he was losing with each illness. After a lot of prayer, we jointly decided that Noah would no longer be hospitalized for illnesses. He is still hospitalized for surgeries, blood transfusions, etc. but we’ve avoided 2-3 DOZEN hospital stays each year by treating infections at home. This has done incredible things for Noah’s quality of life and it has allowed us to allow him to live as normally as possible.
Even though it is a real challenge to juggle everything, we get out and live life with Noah as much as possible. Over the last several year he’s been on hayrides, gone apple picking, been to an airshow, gone on many nature hikes/walks, been to the movies, attended art classes all summer, attended church/Sunday school, gone swimming (THAT was a stunt!!!), played at the park, won our community-wide costume contest (we turned his wheelchair into a pirate ship!), and gone to a zoo, museums, and much more. Each of these experiences allows him to have a life beyond his constant medical needs and allows the entire family to make precious memories that we’ll always treasure. These adventures are only possible because we were able to buy a very, very used 15 passenger bus a few years ago. This is actually the smallest type of vehicle that will accommodate Noah’s chair AND our big family. We bought the best used bus we could afford at the time, but it was extremely used.
Several months ago the rust on the bus began increasing exponentially and the entire undercarriage, wheelchair lift, and even door frames are rapidly getting dangerously rusty. Our wonderful mechanic has told us that we absolutely need to replace this vehicle before something dangerous happens. We don’t just rely on this bus for fun and adventures. Noah sees about a dozen different specialists regularly and each is a 100-mile round trip. He also has regular blood transfusions and has a surgical procedure every 4 weeks – again, each is over 100 miles round trip in the bus.
A used but reliable (read: not money pit) bus will cost in the vicinity of $20,000 with many of the buses on the market costing far more. It is absolutely essential that we replace this vehicle as soon as possible but we simply lack the financial resources to do so.
Even with your overwhelming schedule and financial difficulties, you have chosen to support other families of children with medical needs. Please tell us about your non-profit organization.
Noah has always been a very giving and generous child, and a couple of years ago he got very insistent that we find ways for him to help other children who are sick. In response, we started Noah’s Hands of Hope, a 501c3 non-profit foundation that helps children (and their families) dealing with mitochondrial diseases and other life-limiting diseases. You can visit our website at http://www.noahshandsofhope.org. We provide meal and gas cards for families, toys and activities to help with clinic visits and hospital stays, and more.
It is important to understand that this is not a foundation set up to cover Noah’s expenses – it’s a foundation for helping other children/families! While we are still a very small organization, it’s been a huge blessing to be able to help other families. I often say I have the most fun job ever – I get to “play Santa” and send children and families things that make a meaningful difference during some of their hardest days.
How can people help and contribute?
If anyone is interested in donating to Noah’s Hands of Hope, they can do so at our website, www.noahshandsofhope.org. The site has a page listing ways that people can contribute whether they’d like to donate financially or send toys/blankets/etc. for the families we serve. If anyone is interested in doing a local fundraiser (lemonade stand, Tupperware party, church offering, yard sale, etc.) they can contact me through the website. Again, this is for the families served by the foundation we started.
As for our bus situation, a friend has set up a fundraising page for our bus at http://www.youcaring.com/medical-fundraiser/wheels-for-the-estes-family/74584. Anyone who wishes to contribute to our bus fund can do so at that page. Other ways to help would be to share this information with others and encourage them to give and to share. If you are on Facebook, you can follow Noah’s story at https://www.facebook.com/PrayingforNoah.
Note from MomToManyGirls: Two things I want to make clear here. Jeff works part-time, which means no health insurance. And they are meticulous to use donations just as they are intended. If you donate to the bus, the money goes to the bus. If you send a personal gift for popsicle sticks, they go buy popsicle sticks. Ok, that’s kind of an exaggeration, but you get the idea. They don’t take donations to spend haphazardly, even though they have an overwhelming number of needs.
Really, if you want to support a family and/or organization that will appreciate and use 100% of the money as intended, then you can’t go wrong with helping the Estes family or Noah’s Hands of Hope.
To donate to the bus (an urgent and immediate need): http://www.youcaring.com/medical-fundraiser/wheels-for-the-estes-family/74584
To donate to Noah’s Hands of Hope: www.noahshandsofhope.org