House Expansion for Griffin
Just over four years ago my wife Krissy gave birth to triplets! Sadly, within moments after all three had joined the world, one of the doctors uttered the following words to us, "Your son has no eyes." I still feel the shock from that statement to this day.
Little did we know that was just the start of Griffin's difficult journey on our little blue planet. Over the course of the next six months there were lots of tests done including three genetic tests to determine what else might be wrong with Griffin, as it became obvious there were other issues at hand. After the third genetic test, the doctors determined he had SOX2 anophthalmia syndrome. What is SOX2 anophthalmia syndrome you ask?
SOX2 anophthalmia syndrome is a rare genetic disorder characterized by abnormal development of the eyes and other parts of the body. SOX2 anophthalmia syndrome is estimated to affect 1 in 250,000 individuals. About 10% to 15% of people with anophthalmia in both eyes have SOX2 anophthalmia syndrome, like Griffin. People with SOX2 anophthalmia syndrome are usually born without eyeballs (anophthalmia), may also have seizures, although Griffin doesn't thankfully, brain abnormalities, slow growth, delayed development of motor skills (such as walking), and mild to severe learning disabilities. Some people with this condition are born with a blocked esophagus, which is often accompanied by an abnormal connection between the esophagus and the trachea. Genital abnormalities have been described in affected individuals, especially males.
Griffin, now four years old, has all of these including being partially deaf in both ears, he can't eat or drink due to the esophageal issues and survives on a liquid diet through a feeding tube in his stomach, and although he is working hard in school learning sign language and braille and using communication switches, he is still unable to communicate meaningfully with us. We feed him three times a day via his stomach feeding tube, and he is connected to a pump at night that feeds him the rest of his food in order to get enough calories to grow. He is still not able to crawl, but can roll over from back to front. He is unable to keep his head upright when in a seated position for extended periods of time, but he is getting there! He tends to "˜overheat' very easily making travel outside or in the car often difficult. I could go on and on with his other issues, trips to the hospital, and surgeries, but I want to shift to the positive aspects of Griffin's life and our plans to make it even better!
Griffin attends a special school where he gets specialized deaf-blind assistance and therapy from several fantastic teachers and therapists. My wife Krissy and I work with him at home on a daily basis trying to help him learn to crawl, sit upright, and stand, as well as more specific things like holding on to toys, learning to swallow, and trying to talk. Krissy's parents, Bev and Gary, also provide invaluable help with Griffin working with him, babysitting, picking him up from school, going to doctors appointments, and financially. We would be lost without their help. All these amazing people that help make life better for our son we have dubbed "Team Griffin."
Griffin has a long road ahead of him and struggles on a daily basis, but what stands out when you watch him is his determination and positive attitude. They permeate his personality. He has his bad days, but on the whole he is almost always smiling and laughing to the point that I am amazed and reminded not to take anything for granted. It sounds clichÃ© I know, but I really do stop and think that when I watch him. He has "˜laughing fits' where he will be laying on the floor and just start laughing hysterically for no apparent reason for minutes at a time that infects everyone within earshot! I love those.
What we are hoping to do is raise money to help expand our house to make it accessible for the Griffer (as we often call him).
We originally wanted to move and find something a little more suited to what he will need, but like so many people in recent years, we found ourselves vastly underwater on our mortgage due to plummeting housing values which made moving financially impossible, short of walking away from the house (foreclosure). So we decided to look into building on to it. Right now it is a 950 square feet bungalow style house that will soon become too small for him as he grows. He has a custom wheelchair but due to the nature of our house, he is unable to use it in our home and we are currently carrying him throughout the house. The entryways are too narrow for a wheelchair and our bathroom barely holds two adults. We won't be able to get a wheelchair through the door, let alone be in the bathroom with it and manage him into the tub and/or toilet.
We plan to tear off the entire back wall of the house and expand it outwards to add a handicap accessible bedroom complete with a lift system for when he is too big to lift, a handicapped accessible bathroom connected to his bedroom, and a larger kitchen/dining room with two exterior doors to have enough room for Griffer to join the rest of the family when we eat and to get a wheelchair in and out of the house. This will also allow Griffin to have a dedicated space for his specialized equipment as he currently shares a bedroom with his brother and sister!
We have enlisted the help of a family friend who is a builder to help reduce the cost of the rough construction. Also, my father-in-law, my brother, and I plan to do all the finish work ourselves to save as much money in labor as we can on this project. We are planning to start construction this Spring!
So that is what we are hoping to do to help make life a little easier for Griffer and also allow us to better help him. Thank you for reading and please feel free to share!
Our general contractor (GC), Ranger Construction, walked off of our project in mid-February. We have paid Ranger 98% of our contract for a job that is, at-best, 60% complete, and Ranger has failed to deliver thousands of dollars in paid-for materials. Why did Ranger decide to do this to our family? We're not entirely certain, but we know they made the decision immediately after learning that they were not going to be able to get a tax write-off for the "discount" they were giving us on the project. Apparently, despite knowing that the money to fund the project was coming from the GoFundMe campaign, Ranger thought they could get a receipt from the Chive Charities that would permit them to take a tax benefit from "discounting" the cost of the project. In any event, at the end of Valentines' Day week, Ranger walked off the project, got a lawyer involved, and told us that they would not come back to the project unless "we restructured our agreement."
Under attack by Ranger, we had to go get counsel for ourselves. Unfortunately, we didn't know how we would be able to afford it. Fortunately, one of our best friends is a lawyer, who now lives in Florida, and he put us in contact with a partner at his old firm Clark Hill (Jordan), and told him about our story and what was happening. Jordan and Stu at Clark Hill agreed to take our case pro bono! This was a miracle in itself, as we certainly didn't have the money to pay for a lawyer to defend our interests, while trying to finish our house project so we might eventually return home, especially considering that Ranger took nearly all of the money we had set aside for the project.
So, back to the house. February essentially saw no work on the house, except that done by us. We got a new contractor who graciously helped us during the drywall party and is now helping us resurrect the project as best we can. We are finishing the process of determining what materials are still needed, what work is still not completed, and (even worse) what work was done incorrectly. As if this story is not enraging enough, the list of items not done correctly is significant and will need to be fixed, on top of everything else. This included having Ranger complete Griffin's handicapped-accessible bathroom!
So here is where we are"¦
Ranger has nearly all of our construction money, has refused to continue working on the project, has not completed a large portion of the job or delivered a significant amount of materials we already paid for, and has done a lot of things wrong or poorly in the house that will need to be fixed. Making matters worse, since we paid Ranger all of the GoFundMe money we had, we do not have enough money to complete the work to get back into the house. We took out a loan to complete the work that we were originally responsible for and what we have left is tens of thousands of dollars short of how much we need to complete all the work. What this means is that essentially Ranger has now taken our house from us as well.
As you may be able to imagine, we are having trouble, because we can't keep our minds from dwelling on this nightmare. Neither of us has been able to sleep well, and both of us are incredibly stressed. In fact, Krissy recently said she is "no longer happy, because all she can think about all day and night is how Ranger has destroyed what was supposed to be our dream for our family." All I could do was hug her and nod in agreement.
While we are looking at our legal options and trying to mitigate our damages, the important thing is to get our family back into our home as soon as possible, and right now we simply can't do that. We have been trying our best to KCCO for a couple months now, but as you can imagine having the dream that all of you handed to us last Spring taken away by the very company we hired to build it is pushing us beyond our limits. So sorry to share such sad news, but we wanted to share with all of you what has been going on. Hopefully, our luck will turn, and we'll be able to get our family in to the house soon"¦
- Heston & Krissy
God bless :)
Update us! We would all love to know where you are in the house planning process.
PLEASE HELP ME IF YOU CAN IN ANY WAY.
It's nice to see that you guys met and surpassed your goal, I am also need in assistance so please check out my site everyone and agian, God bless you all gofundme .com/30kc64
You and your family are amazing and dedicated..... I hope to receive as much successful with my sisters fund raising to further her education to help young adults going through hard time in high school. She will be one of our helpers with these new generations of young adults.
Wow. I just read your story and I'm completely blown away. I admire your strength and courage . My prayers go out to your family and that little precious baby boy. But I do believe that God make no mistakes and that your son is made exactly the way the lord wanted him to be. I'm on this site for help with my wedding but when I saw your page, I realized that there are more serious matters going on out here. Wish I had money to donate to you because I would happily do it. I'm happy that you guys reached your goal and even more. May God bless your path of success. :-)
May God's peace and patience be with your entire family/team! God Bless!
Prayers for your family I hope I can be as successful in my fundraiser for my baby cousin. She has a really rare heart condition. Shes only 8 months old. I can sort of relate with you. When I get paid im going to donate to you. God bless you!
Amazing,, God bless you!!
You and your family are in my thoughts and prayers!
God bless you
You better keep us updated or else we may never stop donating ;) Chive on Steins!!!!!! :)
A chiver in need gets help indeed
This is so beautiful! i'm using this site to bring two little ones home here with me in MI as well. Keep praying and believing. This makes me realize there are good ppl in the world who will help others in need!
I shared this story with a doc I work with and his comment says it all...."I guess there are still good people out there." Way to go Chivers/Chivettes! KCCO! God bless Stein family!
Stein family, can you please share my link on fund me.
Stein Family, your strength gives us strength! Continued blessings your way. Thank you for sharing your story. ChiveNation you are incredible. ChiveOn, ChiveStrong!
For those who don't understand what TheChive is, this is a perfect example. It's not just the hilarious pictures, videos and eye candy. There are no true words to explain what a Chiver/Chivette is, but this page explains it all. I've never been prouder to call myself part of the ChiveNation.
Good job Chivers. 5.5x a goal is a good way to say 'we don't DO goals'.
Will come back when I find my bank card. I can just see that expanded house now. The little guy deserves to have "no boundries". Oh, and while you are at it, make sure that you don't forget his brother and sister.