Yvonne Jones

My name is Yvonne Jones and I live in Grand Forks, North Dakota with my husband Josh and our 2 year old son Nicholas. We have had quite an interesting year with Nick. He was growing in leaps and bounds, eating well, developing like a normal baby. About 6 months of age, our doctors became concerned with the size of his head and were taking notes with every visit. At a year of age, the testing began. Nick went through his first EEG and MRI and they both came back irregular. We were sent to the Minneapolis Children's Hospital for an MRI on a kid-size machine, and that also returned abnormal. A copy of the MRI's were sent to the Pediatric Neurologist at the Mayo Clinic in Rochester, MN. Our next step was genetic testing. We found out on November 26, 2009 that Nick has a form of brain disorder called a Leukodystrophy. There are over 40 known Leukodystrophies out there, and many more that are unknown as of yet. The form that Nick has is called Alexander Disease., which has been divided into three forms based on age of onset and type of symptoms: infantile, juvenile, and adult forms. All of the forms are rare, although adult onset Alexander Disease is the most rare of the group. The majority of all cases of Alexander Disease are caused by a defect in a specific gene called GFAP, which stands for Glial Fibrillary Acidic Protein. GFAP is an intermediate filament protein, which means that it is involved in the structural development of the cells. As of right now he cannot hold his head up very well, or sit up on his own. He takes Diazepam via a suppository twice a day because his muscles tend to stiffen up. He also attends Physical Therapy twice a week to help him strengthen his muscles.

It has been a rough road for us over the past year. We are so thankful that the Lord has blessed us with such wonderful family and friends. There are days when I want to just give up, say forget this, and walk away, as if this never happened. But then I look at Nicholas, his big brown eyes, his beautiful smile, and it melts my heart all over again. How can I ever give up on him? He didn’t ask for this to happen to him. All he wants is to be loved. Jesus chose us to be Nick’s parents because He knew that we could handle this task. People tell us that we are so strong, but it is hard to hear, or even believe at times. I do not think I am strong. I am the weakest person that I know. If anyone is strong, it is Nicholas. He has been through more in his first year of life than most adults. He is truly my hero. Whether I am strong or weak, I know one thing. I am his mom, and that’s the greatest gift that the Lord could ever give me.

Denise LaBine

My name is Denise LaBine. I live in Grand Forks, ND. I am 29 years old. I was born with Spina bifida (meaning split spine). This condition occurs when the embryonic neural tube is not completely enclosed. Because I was able to receive treatment, I lived-- but treating the problem doesn't "fix" it entirely-- and so I’m paralyzed and needs to use a wheelchair.

Life is a lot different when you are in a wheelchair. You can't pick up things that you drop on the floor easily. You can't do most of the normal activities in which people bond and form friendships. People look at you when you are grocery shopping. You can't just hop in a car and go out on the town. When I was younger I couldn’t just pack a bag of cloths for an over night with friends. I had to pack my braces and anything I used for personal cares that I need to do because I am paralyzed. Everything you do takes some sort of planning and organizing.

It's not easy to get dates in high school when you are different It's an emotional struggle in this and that area. It was very lonely to see my friends have boyfriends and go out on dates. I felt very left out. Friendships themselves were very hard starting in late elementary school because it became “to cool to be with someone who was different”. From about 4^th grade to freshman year of college I only had one or 2 good friends. When I was in college I started going to a college Christian Group called IVCF. It was there for the first time in years I felt like any one else when I wheeled into those meetings. That sense of belonging only intensified When I started going to HOPE Church in the mid-’00. It is there that I feel truly accepted among my able bodied peers.

Although my relationships with my able bodied peers are very important to me, there is one relationship with a guy in a wheelchair that is most important to me. That is the relationship I have with my fiancé, Joe. Like me, Joe also has Spina Bifda and is in a wheelchair. He is from a small town in North Dakota about 80 miles North of Grand Forks. We met when we were 2 years old. When I was a child my mom brought me to our local rehab for therapies. Joe’s mom would drive the 80 miles to take him to therapies. When I was 2 years old the Rehab wrote a newsletter on me and Joe’s mom picked it up and got in contact with my mom. Though out the years we stayed in contact and even got together from time to time. Then in January 2001 we started dating. We’ve been dating for 9 years. We got engaged December 20, 2009. He lives in a two bedroom and two bathroom town home. Before he moved into his home things had to be made accessible for him. So now his house works for him but not me so starting probably this summer or winter the house will be made more accessible for us. This includes lowering the counters in the kitchen, putting in just a stove top that leaves the bottom wide open so that when either of us wants to cook we can just wheel under and use the stove. Then the oven will be a wall mount. Since the bathroom in the master bathroom is already made to fit Joe’s needs, we will be destroying the second bathroom in his home to make that my bathroom. How many wives can say they actually have their own bathroom?! Pretty sweet I think. But in all seriousness it will make our lives easier considering our needs.

Living my life is not easy. Because of my disability I’ve had plenty of surgeries and other obstacles to over come. When I go through a rough time, I often think, “Why me? What did I do to have this all happen to me?” but then I look back and I realize that this is all in God’s plan for me. I don’t know what the whole plan is, who does, but I am looking forward to the day I can sit with my Maker and ask, “So everything that happened to me was all your doing huh?” and just hear what He has to say.

Britt Lazur

Britt has a condition called Alopecia. It's an immune disease that doesn't cause any health problems, but it poses a cosmetic one-- she loses her hair. As a woman in a society that is focused so deeply on appearance, this is difficult. It took her a long time to feel secure in her condition, and she's been able to hide it from many people because she wears a wig. [I took her senior photos last year, and I had no clue!]. Being a part of this project was a step of emotional maturity for her, as she is learning to be more open and accepting of herself.

Her boyfriend of almost a year has not seen her without a wig-- these photos will be his first glimpse of her in her natural state.

Britt came by the studio and let me take a photo of her both with and without her wig-- I spliced them together.

Britt's in her first year of college. She told her roommate about her condition right away, but not many others. Eventually, she did a speech in her honors class and opened up about the condition. Most people wouldn't know that she was wearing a wig unless they got really close-- it's the part in the hair that would give it away to an observer.

She can "style" the wigs-- but not like we do. The hair is synthetic, so it can't handle the heat of a curling iron or a straightener. She can put curls in it overnight (while it sits on the manikin head on her night-stand)-- but that's one of the few/only "styling" options available to her.

She has 2 wigs, but she generally just wears one of them. After a year, she might choose a new style again, but she doesn't switch it up day by day.

When she gets home from class or work, she normally takes her wig off right away and doesn't put it on again unless she leaves the house.

Putting it on the manikin head overnight keeps it in the "head" shape.

There's a piece she puts on underneath the wig. I don't remember what it's called (if there's a name for it), but it both keeps the wig from making her uncomfortable and scratching her scalp, and it also keeps it stuck tightly in place so she doesn't have to worry about it moving around.

It works pretty well to keep the wig in place-- although, if she scratches her head, the hair will move from side to side.

She's pretty used to the process by now, and it only takes a couple minutes.

The upside to the situation (that actually makes me a bit jealous) is that she doesn't have to spend a half hour to an hour styling her hair in the morning, or washing it in the shower everyday. She saves a lot of time on maintenance :) Not to say she doesn't have to maintain, though...

Once a week-- or whenever it starts to look greasy-- she washes it. She fills a sink with water, fills it with a special shampoo, and lets it sit for a while.

Then she dries it-- but not with a blow-dryer, of course :)

She has to wash it at night so that it can dry for several hours overnight on the manikin head.

She has to spray in some leave-in conditioner to keep it healthy and soft.

I asked her about swimming-- and she just hasn't done it very much lately. She recently bought a swim-cap, so she can wear that when she goes.

She says she has an ironic sense of humor. Here's a magazine that has an article titled "Get Long Hair Fast"... as if it were that easy...

Britt is trying a new experimental procedure. This is a cream that she rubs on her head everyday, and it is supposed to promote hair growth. It's an irritant, technically, and that's certainly what it does-- it's irritating and it makes her scalp itch. It can also stain her scalp, so they are watching carefully and will discontinue use in needed. But, it's better than the alternatives-- either to have monthly needle injections, or just give up altogether.

There's an online support group (similar to Facebook) where Britt is able to communicate with others who have Alopecia. Many men have it too, but it's a bit easier for them. They can shave their heads and call it a style preference-- but she isn't quite comfortable with that idea for herself.

She's also started a journal about her thoughts and feelings about her condition.

Here's a photo of her that was on her computer-- this is when her hair started thinning out. I think it was taken a couple years ago, or less.

The condition can come and go in someone that is affected. She lost her hair as a child, too, as you can see here. However, it only lasted for a while and then it all grew back. She hoped it wouldn't come back or show symptoms, but it did during the summer after her junior year.

Here's Britt with her natural hair, when it was slowly thinning out. Soon after the photo was taken, they decided that it was time to use a wig.

In a year or two, her hair could all grow back, stick around for 20 years, and then she might lose it all over again. They aren't sure what triggers the loss-- except that they think that it might be stress related. We were discussing the irony of it all-- If you were already stressed when it started, it's really not going to be any easier to relax when you have such an emotional problem in your life. So it's a weird cycle. As soon as she is "okay" with it and the way she is, she may very well go back to her normal state.

Britt is learning to accept herself, despite the insecurities that come with this sort of condition. She says she's both lucky and unlucky that she's able to "hide" behind a wig. It makes it easier for her on the really difficult days, but it also has kept her from dealing with her emotions about her reality, and with being honest about the condition with those around her. Opening herself up to being a part of this project was a step forward for her, and she wants to continue to help others with her condition.

Denise LaBine (2)

On Sunday, I had a chance to get a few more shots of Denise. 

Here's a photo of her and Joe right outside the sanctuary of the church they attend together-- Hope Evangelical Covenant. 

Before heading home, Denise catches up with old friends. I don't know who this friend is, but I like what she's doing-- kneeling during their conversation.

 [If you know someone in a wheelchair, I urge you to try squatting, kneeling or sitting as you chat with them, if you don't already do so. I'm sure it gets tiring, looking up to the level of those standing around them all day long...]

How easily Joe and Denise opened doors (without pressing the button to open it for them) impressed me!

Joe's van is equipped with a ramp. It was a nice day, without any snow/ice/mud/puddles/etc. I wonder how difficult it must be to get out to the van in other conditions.

It all happened so quickly! Once the ramp is down, they are able to get in just about as fast as someone stepping into the vehicle on foot.

Denise LaBine

Denise LaBine was born with a birth defect called Spina bifida (meaning split spine). This condition occurs when the embryonic neural tube is not completely enclosed. Because she was able to receive treatment, she lived-- but treating the problem doesn't "fix" it entirely-- and so she is paralyzed and needs to use a wheelchair.

Somedays, I feel as though it's difficult for ME to maneuver around people/things in the aisles of the grocery store-- but can you imagine how much more difficult it would be to be confined to a chair 24/7, and still need to accomplish the same type of tasks? I think that it would a struggle both physically and emotionally, especially in the winter months when the snow and ice are everywhere. Denise is an upbeat person with a positive personality-- and, in fact, her disability has created some real joy in her life!

Joe, Denise's fiance, also has Spina bifida. His parents were missionaries in Nigeria when he was born, and his parents came back to the United States so he could receive surgery and treatment. His family found a pamphlet with some information about Denise, and contacted her family for help and support-- this was when she was only 2 years old! Their families remained friends throughout the years, and so did they. Joe began to have feelings for Denise in high school, but she had no idea. Eventually, she figured it out and decided to give the relationship a whirl-- and she couldn't be happier.

Denise is holding a prom photo from 2000 - she and Joe went together, "as friends" at that point in time.

Here's the ring!

As you can see, she can't help but smile when she looks at it.

Denise lives in an apartment that is designed to make it easy for her to do normal tasks like cooking and washing dishes. She still feels like it's hard to see into the pots on the stove, so she has a mirror to assist her.

She's able to get up close because the counters do not extend to the floor.

The fridge is just like any other, though. She just gets as close as she can.

She can reach almost anything in there, except the top shelf. Sometimes, things are stored there, but she has someone come in a few times a week to help her- and family often drops by to assist with things like that.

When she and Joe are married, she will move into his town home. Not many people who have a disability can afford to own their own home, but Joe has a full-time job and takes complete care of himself, which is really cool. But even though they are both in wheelchairs, the have different needs for their homes and surroundings. She will need a separate bathroom and they are planning to redo the entire kitchen and other areas so they will be comfortable and accessible for Denise.

Denise has had over 30 surgeries-- mostly related to Spina bifida and the health issues that go with it, but some others that don't (such as wisdom teeth removal, tubes in ears, etc.). She wears braces on her feet when she goes out of the house and is wearing shoes, but at home, she wears compression socks and some comfortable slippers.

She usually gets help in reaching items on the shelves, but if no one is around, she finds a way to get the things that she needs down.

If she needs to take a shower, she transfers herself from the wheelchair to the bath chair. She moves from the wheelchair...

...onto the bed...

... and over to the bath chair.

It's not as easy to move around in as the wheelchair, but it works. It wasn't designed as well as it should have been to fit her "just right"-- but it works well enough.

She's able to wheel into the shower area. She can take showers alone, but a few times a week she receives assistance in the process.

She doesn't have the luxury of just running to the bathroom to urinate quickly like we do. She had a surgery to make life a little easier-- that's a tube that goes into her body.

She uses a cafeter instead of having to urinate on the toilet.

To have a bowel movement, she has to stimulate the process by warming a solution.

Then she connects a tube to her body.

She puts the solution in a syringe, and inserts it from there into the tube. This begins the process of removing the waste...

It's normal to her :)

Her family is really supportive, and they come by whenever possible to help with little things that can make Denise's life a little easier. She's very independent and doesn't "need" them to do that, but her family shows their love to her by doing whatever they can.

It was her mom's 60th birthday. This year, she also got a "mother-in-law" card from Joe, too!

I'll be following Denise again soon to see a little more about what life is like for her. It's so encouraging to see how she doesn't seem to get down about the difficulties of being in a wheelchair-- she really enjoys life and is very involved in church activities and in her many friendships. Again, she's another strong woman and a great example of endurance and perseverance.