A Mother’s Perspective on TMA Family Camp

By Rebecca Whitney

I know it sounds cliché, but it is the truth when I say that my most challenging, yet most rewarding job, is being a mom to my three children. There are days when I am so exhausted from the physical and emotional strain, that I simply can’t sleep. I’m just that tired and overwhelmed. Then there are the days when I am elated and have a sense of peace because my children’s smiles, excitement, happiness, or joy is so conspicuous it permeates through to my heart and soul.

When the stressors of a rare diagnosis such as TM compound the day’s exhaustion, the moments of peace and happiness can seem to be few and far between. Those moments are still so precious and hold a very special place in my memory and my heart.

One of these special moments, in particular, was when our family attended the TMA Family Camp for the very first time. It was a time in our lives when we were coming to painful realizations that our family’s life, our son’s life, were indeed very different from most of our family and friends with children because of our son’s diagnosis. It was when he also really started to understand that some of these differences weren’t going to change; that he wasn’t going to grow out of the challenges he had always known. The same year we attended camp for the first time was the same year our son had met another young boy with the same diagnosis. He had found a comfort in getting to know him and was excited that his family was attending camp, too!

At camp, we met many other families who understood what made our lives different from so many other families – but we were so much like the families at TMA Family Camp. Some had been on this daunting journey for many years already, and others were newcomers to this world of “rare,” and they had bewilderment in their eyes much like I know we did when we heard our son’s diagnosis. My other two children even remarked after our first day at camp how it was so comforting not to feel so “different” from everyone else. We were able to talk with medical professionals from world-renowned centers that we never even fathomed we may have access to for our son. We learned so much as parents and as a family from not only the medical professionals attending, but from the other families, parents, and children. We came away with a renewed sense of hope and a fighting spirit. My son had cried the night before we had to leave, he simply didn’t want to leave the magical place of camp and his new-found friends. He had found joy in attending the camp that he hadn’t experienced before, and it was so hard to leave to go back to our day-to-day routines. It was tough to see him so sad about leaving, but I knew it was only because of the happiness and excitement he had found with this extended family; a family we knew would be a part of our lives for the long-haul.

It is my sincere hope that if a child, a parent, or a sibling, must face a life-changing diagnosis of one of the rare neuro-immune disorders, that they may have at least one time at TMA Family Camp with their TMA family. My life as a mom caring for a child with TM, my son’s life, my entire family’s life changed after our first time attending camp. We found perspective and hope, a joy and a sense of peace that I’m not sure we would have found otherwise. This mom found other hearts who knew what her heart had been and was going to go through.

This Mother’s Day, celebrate the moms in your life and the love they have shared.

Support children and families diagnosed with rare neuro-immune disorders by giving them a chance to attend our Annual TMA Quality of Life Family Camp; we will honor your mother by sending them a Mother’s Day Card on your behalf.

Click here to send a card: http://ow.ly/NeNu30beUad

The TMA Quality of Life Family Camp is a unique and life changing experience that provides children and families living with rare neuro-immune disorders (ADEMAFMNMOSD and TM) a chance to experience the joys of a completely accessible camp and engage with leading medical practitioners so they can be better advocates for their own health. At camp, these children can be themselves, free of fear and stigma and not be reminded of their daily challenges.

 

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Announcing the 2017 TMA Annual Quality of Life Family Camp

We are excited to announce that our TMA Family Camp will be held Saturday, July 15 through Wednesday, July 19, 2017 at The Center for Courageous Kids (CCK) in Scottsville, KY.

How to Apply?

To start the application process, please complete this online form. A TMA staff member will contact you via email within 48 hours to share additional information about the application process.

Eligibility

Families with children diagnosed with ADEM, NMO, TM, ON and Acute Flaccid Myelitis (AFM) who are 5 to 17 years old are eligible to apply to camp.

Applications are welcome from older and younger children, who may be accepted on a case-by-case basis.

Up to two adults living in the same household as the camper and siblings may participate in camp.

All applicants must be members of the TMA. Membership is free. Become a member.

Arrival and Departure Information

Families will receive detailed information about arrival and departure times along with their acceptance information from CCK. In general, most families arrive at camp around 3:00 pm on the first day of camp. Camp closes at noon on the last day of camp.

The closest airport is Nashville, Tennessee. For help with ground transportation between the airport and camp, please contact the TMA at tmakids@myelitis.orgwith travel information. Please do not make plane reservations until you receive an acceptance letter from CCK.

Cost

There is no cost for families to come to camp besides personal travel expenses. The TMA and CCK have a partnership under which we cover the cost of camp.

The TMA will be able to offer some financial help, based on need, via travel grants to families. All accepted families will receive an email with an application form and guidelines to apply for this funding in approximately May 2017. They are offered on a first come, first served basis until grant funds are no longer available. Grant funds are disbursed as reimbursements once grant requirements have been met.

Education Program

Medical professionals and specialists from our medical community will be joining camp and provide a three-day education program for the parents and any of the children, teen or young adults who attend camp and are interested in the education program.

All medical volunteers attending the TMA Family Camp have been invited by the TMA to join as camp volunteers and to participate in an educational program during the camp, where they will be able to share their experience and make recommendations, but will not be able to provide specific medical advice.

Contact Us

Erin Coriell
ecoriell@myelitis.org | 1-855-380-3330

Rebecca Whitney
rwhitney@myelitis.org |1-855-380-3330

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Reflections from the 2016 Annual TMA Quality of Life Camp

Sandy Siegel, President, The TMA

After completing her residency in neurology, Dr. Sara Qureshi did a fellowship in neuro-immunology at the University of Texas Southwestern in Dallas. She studied with Dr. Benjamin Greenberg, one of the leading specialists in TM, ADEM and NMO, director of the TM and NMO Center and board member of the TMA. Sara became a specialist in these rare neuro-immune disorders. Upon completion of her fellowship, Dr. Qureshi began her clinical career at the Billings Clinic in Montana. She is an avid hiker and loves the outdoors; she picked the right place. Through her training and experience, Dr. Qureshi has become an important member of our medical community. She was invited and we were thrilled that she was able to attend camp, which was held this year from July 31-August 4, 2016 at the Center for Courageous Kids in Scottsville, KY. I have been communicating with Sara through emails; this was my first time meeting her.

Working at the Billings Clinic, Dr. Qureshi has patients from the many reservations across Montana, Wyoming, the Dakotas and across the western US. Sara is an excellent doctor and she has a heart the size of Montana. She has been caring for a young boy from the Sioux tribe who has NMO. This is a horrible autoimmune disorder; a person can have multiple inflammatory attacks over time that impact the spinal cord and the optic nerves. This boy has already had 3 attacks at a very young age. Most of the physicians they have been dealing with have been significantly under-informed, and his care had been less than adequate before the family found Dr. Qureshi.

This family lives on the Ft. Peck Reservation in a small community called Poplar. I know Poplar, as I once attended a Halloween pow wow there.

For two years, from 1976 – 1978, I lived in a small community on the Ft. Belknap Reservation; the reservation just to the west of Ft. Peck in northern Montana. I did my dissertation research in Hays as a cultural anthropologist; I lived with the White Clay People and French-Chippewa-Cree or Metis. The reservation was also home to the Assiniboine tribe. In addition to my research, I also taught social studies at the Catholic mission school, I was a bus driver and janitor, I helped with the chickens and the potato plot, I sold bingo cards on Thursday nights, I taught hunting safety through the Montana Fish and Game Department, I served on the public school PTA, I taught anthropology courses through the Intertribal Education Center, and I also taught GED classes. It was an interesting two years. I’m pretty sure that I was the only Jewish person who has served in the Jesuit Volunteer Corp.

Dr. Qureshi wanted this family to come to camp and she worked with them and advocated for them to get there. Dad told me that they drove down on the back roads so that he didn’t put too much wear on his old van. I’m still trying to imagine the back roads from Montana to southern Kentucky. They saw a pretty good chunk of America.

We had a great camp – 30 children with TM, ADEM and NMO – 30 families, including a family from Australia. And of course, we brought Abhijit Ganguly, our support group leader, from Kolkata, India. We had an awesome group of physicians for our education program and all of our James T. Lubin Fellows attended; the 2 who had completed their programs, and the 2 who are just about to begin their two-year fellowships this month.

I make a point of introducing myself to all of the new families – and about half of the families were new this year. And I spend time with the families that I have come to know over the years… Pauline and I love that we have watched most of these children grow up – some of them are starting college and some of them are beginning careers and having families. Totally cosmic.

I made a point of spending time with this family from Montana. They had an awesome time. Their son’s medical care is very complicated because little is known about NMO and he needs to be on an immune suppressant to lessen the chances of more attacks – or to lessen their severity should they happen. They are so fortunate to have Sara in their lives – most people on a reservation would not be receiving the kind of medical care that they are getting from her for a very rare disorder – and it is just a 5-hour drive away… not too bad by Montana standards.

On stage night, this family gave a star quilt to camp to thank camp for their experience. The dad, William, explained that when someone does something good for you, giving them something to thank them is the Indian way; and giving a star quilt is very special. William explained that when his father died, he was pallbearer at the funeral. His mother gave star quilts to each of the pall bearers. It was this star quilt that he was giving to camp. There was not a dry eye in the house. Also, during camp week, Abhijit admired a t-shirt that William was wearing – it had a beautiful drawing of an eagle. William gave the shirt to Abhijit … watching this brought back a lot of memories. If you admire something a person has, they are obligated to give it to you. The Indian way.

On one of the evenings while the families were watching a movie, William and I sat in the dining hall and talked for a few hours. We talked about reservation life and we talked about our lives. I explained to him that while I lived in Hays we became very close with one of the families there. I spoke to him about Ray and Irma and Gordon and Edith. I told him that this family were wonderful singers with a very popular drum that traveled the pow wow circuit across the western states. I told him that Ray and Irma were like parents to me and that Gordon and Edith were like brother and sister. Gordon and Ray taught me a lot about the traditional culture. All of these people have passed away. When I visited Hays a couple of years ago, I made a point of visiting their graves… and I said Kaddish for them.

While I was talking to William about this family, he told me that he knew of them and the Hays Singers. Then I said Gordon’s full name to him, and his eyes opened wide… he told me that Gordon and his father were close friends. After I left Hays, Gordon had spent some time on Ft. Peck – and that is where he became good friends with William’s father. Later, Gordon moved back to Hays, and William’s dad spent time with Gordon in Hays.

Going through these stories and our connections while sitting in the dining hall at camp – a camp that we were attending because our loved ones had one of these disorders… minds blown.

I came to camp expecting the same very emotional experiences we have every year at camp. To have my TMA-camp life intersect with my reservation life was just not anywhere in my imagination. What a life.

Two photos attached – one of me and William in the camp dining hall and my favorite photograph of Gordon that I took before a basketball game at the mission gym – Gordon was singing a flag song … and he made that hand drum.

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TMA 2016 Quality of Life Camp

Our Annual Quality of Life Camp at The Center for Courageous Kids (CCK) was a huge success!  We are incredibly grateful to CCK and all of the families, medical professionals, volunteers and staff who participated and made camp an unforgettable experience!

30 families from across 17 states in the United States and from Canada, India and Australia joined us.

Here are some of our favorite moments from camp this year held from July 31-August 4, 2016!

“Before going to camp I had only met (in person) two other people with TM. It was so great to meet others with TM, and to see the children and families from across the country (and the world!) enjoying themselves during activities, learning and sharing their experiences at the education sessions, and interacting with each other and the health care providers. I also got to participate in some activities and even got to ride a horse!”
–GG deFiebre, TMA Research and Data Manager

“Camp was a great experience! My favorite moments from the week were the times I was able to witness the campers participate in their daily activities such as horseback riding, archery or swimming. The joy each child got from being able to take part in something without having to feel “different” was contagious! Also, during camp I went fishing for the first time ever and caught a fish on my first try. Shout out to the CCK staff for being incredible counselors to our campers and for encouraging me to try something new.” –Timi Schrumpf, TMA Community Partnerships Manager

Our annual Quality of Life Camp is made possible through the generous support of The Roles Family Foundation, our members and a host of volunteer workers. We simply would not exist without your continued support! Thank you!

Our “Send a Kid to Camp” fundraiser is the perfect way to support our cause and help a family get to our 2017 Annual Family Camp. Join us now! Your support really does help change lives! 

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Our TMA Family Camp Experiences

Travelling all the way from Scotland to Kentucky was an adventure in itself especially for Ameera and her Gran. When we arrived at camp it took a while for us to adjust to the time difference but it wasn’t long before we were having a great time. One of things we don’t realize as parents is that children are very intuitive. We think that they don’t notice the little things, but they do. After we’d been staying at the camp in Kentucky for a couple of days, Ameera told me that are hadn’t seen me laugh that much in years and she’s probably right. As parents of children with a rare condition we are too busy worrying about hospital appointments, school and a million other things that we seem to forget how to have fun and that’s what CCK is all about.  I enjoyed the whole TMA Camp adventure from start to finish and will never forget the wonderful people I met along the way … from the parents and their amazing kids to the TMA, doctors, nurses and the CCK staff. Amanda and Anjali also gave wonderful talks on growing up with TM and what they have accomplished. I am sure this gave us all hope for our own TM Warriors and I am already noticing the difference in Ameera since she came back from camp. She is no longer afraid to try new things and is excited about the future. I can’t thank the TMA enough for this experience and hope to return next year.

-Lisa Ali
Parent

When I arrived at the Center for Courageous Kids I felt nervous, as I wasn’t sure what to expect. I’m a shy and quiet person and didn’t have much confidence until I came to camp. I really enjoyed the activities and tried canoeing, horse-riding, fishing and archery. I would never have tried any of these back home and my favorite activity was definitely archery. My mum helped me to look for archery lessons when we came back to Scotland and we found a local club in our area. This is something I am really looking forward to. I felt that by the end of camp I could open up more and felt more comfortable talking to other people my age. The CCK staff were good fun, very friendly and easy to talk to. I loved the whole experience of being there. Messy games were brilliant and I loved the carnival and movie outdoors. I was sad when we had to leave, but I know that I’m a different person now because of the CCK camp and am ready to try new things and meet new people.

– Ameera Ali
Camper

TMA Family camp was an amazing experience that I will never forget. There were so many activities to do and it was great to be with kids who have been living with and understand what I’ve been through. Some of my favorite activities were messy games, woodshop, nature and archery. At camp we also had a movie night where we got to watch a movie outside with our friends, which was so much fun. Making new friends was awesome and it was nice to feel normal once again, because we got to be with people who are in a similar situation. I would love to go back to the camp as a camp member or a counselor; the vibe around the camp is great and it’s fun to be around everyone. At the end of  my week at camp I came to appreciate my life a little more and I already miss my friends from the camp. The overall camp to me was great and I loved it.

– Isabella Lindsey
Camper

We had so much fun at camp. It was the first time we had met anyone else with TM. Caden got to see that there are other kids just like him. We got a much needed break from the most stressful year of our lives and Caden was able to just be a kid again. It was awesome to see him riding a horse and doing archery. That smile on his face was priceless. We met so many wonderful people. We even took our first airplane ride ever for both of us. This was also the first vacation we have ever taken in our lives. We are so blessed to be members of the TMA family. Thank you so much.

– Caden Tobar and Jamie Heminover
Camper and Parent

Chloe has never been to a camp and this was an amazing first camp experience for her. She’s so glad she got to go and wants to return every year. Being around kids like her and nice counselors made this summer special and more memorable than others. Horseback riding, swimming, archery and catching her first fish are just some of the pearls taken from CCK. The TMA made this cross-country road trip possible and it made a huge difference in all of our lives. What a mind-blowing group of people to bring this experience to children and families.   Thanks from the bottom of our hearts!

– Jill & Chloe Russ
Camper and Parent

 

Thank you to the Roles Family Foundation for their support in providing travel grants to families to attend the 2015 TMA Quality of Life Family Camp.

Applications are open for our Annual Quality of Life Family Camp at the Center for Courageous Kids in Scottsville, KY, July 31 – August 4, 2016. If you haven’t already done so, be sure to apply as quickly as possible! If you’d like additional information about our camp, please click here or email us at info@myelitis.org. We hope to see you and your children this summer!

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The Gum Family at The TMA Family Camp

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There are so many wonderful things about The TMA Family Camp at the Center for Courageous Kids (CCK) that I will probably forget to mention some of them. But from the moment you arrive you can tell that you are in for a treat. From the warm greeting at check-in to the thrill of meeting your den counselors, it’s so easy to adjust to life at camp!

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As you get to look around the place, you find there is no shortage of things to do, not to mention the activities that CCK has planned for you. Our family has a wide range of ages (four kids between six and fifteen years old, no comment on the parents’ ages), as well as ability levels. Finding activities for everyone equally is usually a challenge. But at CCK the counselors “buddy up” with the campers so that everyone gets to experience the activities at their own pace. This also gives the parents some one-on-one time with each of the kids, which in a large family can be a challenge. This time also provides a great opportunity for the campers to meet each other away from their parents.

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Another great aspect of camp is the afternoon break. The younger kids can take naps while the older children socialize and share favorite activities. The adults congregate to discuss solutions to the day-to-day problems that can arise with a child diagnosed with TM. Talks hosted by specialists in rare neuro-immune disorders provide another source of useful information. These educational resources are a valuable tool for parents with a child living with TM.

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The meals are another great part of camp. Feeding such a large number of people isn’t easy, but CCK handles it beautifully! In addition to the main course, they offer a vegetarian option as well as a fruit and salad bar. All meals are served family style with a couple volunteers from each table delivering each meal. The open table seating allows for a floating social meet-and-greet with both campers and counselors. There is a unity or bond that forms when we all sit together, talk and laugh, and share the responsibility of cleaning up after each meal. It’s more than just food, it’s a bonding experience.

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CCK is a great camp, and we are very thankful that The TMA has been able to provide this experience to our family. Not only are the activities fun, the campers resilient, the counselors courteous, the facilities more than accommodating, but CCK also takes care of the daily details of life – like food and lodging – which gives each family the chance to bond together. It’s an experience that our family looks forward to each year. We owe tremendous gratitude to The TMA for providing this camp adventure.

~ The Gum Family

The Roy Family Camp Experience!

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My son Parker looks forward to TM Camp every year. In 2007, at the age of 4, he was diagnosed with TM, and the effect it has had on his life – and ours – has been life changing. It has been a difficult struggle, and even more difficult is finding others that understand not only what Transverse Myelitis is, but also what it is like to live with this debilitating condition.

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Attending camp gives Parker a sense of self, allowing him to just ‘be’ around people who, as he puts it, ‘get him’. The importance of this to any child, especially a pre-teen, is immeasurable! He loves everything about camp: the friends he makes, the fellowship with others who deal with similar issues, and probably above all, the activities tailored just for kids. The TMA Family Camp is a safe place where kids can go have fun doing things they might not otherwise get the chance to do. Things like boating, swimming, participating in wood shop activities, bowling, and best of all… fishing! Parker caught a massive catfish this year, and he was so proud. His accomplishment was such a beautiful and positive result of an activity that gave him a sense of value. It’s all he could talk about for weeks!

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To break up the seriousness of the camp content, families were urged to participate in a talent show this year. It was so much fun! Parker had a great idea to have our family simulate a synchronized swimming competition and we all participated. Hearing the audience laugh and laugh gave Parker so much pride, it was hard to suppress my own!

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The camp staff is amazing; they make the kids feel special but not ‘different’. By teaching them, by playing with them, and by helping each child create, they ensured that the activities are set so that children with limitations could still participate and feel good about themselves while having the time of their lives! In addition, the medical staff shares a wealth of information that is both needed and appreciated.

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The friendships my son creates at camp are so important to him. This season, he was able to really connect with another boy who understood him; this is invaluable to Parker. They played together every day and he couldn’t wait to get up each morning to spend time with his new friend. I can’t express how amazing it was to watch my child go from lonely and misunderstood to gregarious and excited about a friendship.

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Also, Parker was old enough to join in the teen group this year, where they held special meeting and discussed real social and emotional struggles they face at school and with everyday life. They were given the opportunity to learn valuable tools to help them cope and succeed in a school setting and beyond.

Personally, I look forward to camp every year because I get to see friends that I have made who truly understand exactly what I go through each day with our own struggles with TM. Some of them have become big parts of our lives and honestly, on some of the hardest days… I wouldn’t make it without the support of these amazing ladies! The parent education portion this year was by far the best it’s ever been. Not only did I learn so much, it was also valuable to hear the perspectives of other parents who have ideas and plans of action I hadn’t thought of. We get to take home a host of new strategies to implement into Parker’s life!

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It is hard to express how grateful we are that this camp is available for families like ours. The strategies, information, friendships, and most of all, memories, we take from it each year are simply limitless. We truly appreciate the grant we received this year to help us get there!

~ Laura Roy

The Green Family Camp Experience!

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We were very excited back in December 2013 when we were selected to attend the TMA camp in Kentucky. Having been through a lot over the past two years, we looked forward to taking the trip and meeting others impacted by TM.

Upon arrival we walked to the dining hall to say hello to contacts we had made through Facebook. It was literally two hours and we received more information than we had in the past two years. We met Janet Dean and we were able to ask her a few questions on nerve/tendon surgeries and she gave us referrals. We could have left right away as we finally had information for an action plan.

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However, it was meeting the rest of the families and children over the next few days that really made our son, Manny, feel like he belonged. He had so much fun with all of the activities and some of them even challenged him. He tried archery for the first time as he was able to participate with a crossbow that the counselor set-up for him. He was also able to go bowling again (with his opposite hand) after two years. We will always remember his smiling face when he rode the horses.

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Manny made friends, he was able to meet and talk to other children without feeling out of place. He has already said that he would love to attend camp next year.

The information shared by the doctors was very valuable and we plan on consulting with them for our ongoing care. None of this would have happened if we did not attend camp.

We want to thank The TMA and the doctors and counselors for a great week.

 

~ The Green Family | Patrick, Kristin, Manny and Rylee

 

When I first learned that I was going to the TMA camp I was nervous, because I didn’t know what it would be like. Once we got to the camp we went to the dining hall and we met a girl named Lindsey. Her TM was a lot like mine but in her left arm. After we met Lindsey we went back to the blue lodge and started unpacking. When we were just going to make our second luggage trip Mary Ann stopped and introduced my family to her daughter Bridget. Bridget was affected in her legs and hands. Bridget was very nice to me the rest of the camp week. On movie night she sat next to my family and we watched Monsters University.

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During the week I had so much fun meeting Allen, our blue lodge counselor, and doing the activities, such as archery, open gym, horseback riding, woodshop, and weird science! But my favorite thing to do at camp was swimming! I can’t wait till I come back next year!

 

~ Manny Green

The Thomas’ Experience at the TMA Family Camp

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We were so thrilled to be able to attend the TMA Family camp at The Center for Courageous Kids on July 23, 2014.  Last year, my daughter Ireland and I attended alone and bunked with a group of ladies and girls and had a fabulous time.

This year, Ireland was so excited to be able to bring her Dad and show him all of the amazing places and people that make camp so special.  Ireland looks forward to camp because it gives her opportunities to do things that she normally would not get to do.  She has a rare disease called Neuromyelitis Optica and has spinal cord and optic nerve damage, and lesions on her brain.  She is currently doing well and has not relapsed for quite some time but still experiences neuropathy, fatigue, and is partially blind.

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Camp is wonderful because there are so many fun options for kids to choose from and it’s fun for parents too. Together as a family, we tried fishing, boating, crafting, woodworking, swimming, bowling, music, cooking, games, archery, and more.

Our favorite family activity had to be Messy Games Night.  Ireland and I both enjoyed covering Dad in ice cream and pudding.  He had his revenge though when he crowned Ireland with shaving cream and volunteered me to have strange green slime dumped on my head. Our team won first place in the Messy Games for being the messiest. We laughed our heads off and really enjoyed the team camaraderie.

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As a family, the five days at camp allowed us to really enjoy each other’s company, to make amazing memories, and to grow closer to one another. TMA Camp will always have a special place in our hearts and we are so grateful for the opportunity!

 

~ The Thomas Family

 

 

Our TMA Family Camp Experience

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This was our family’s second time attending camp at CCK and it was yet again an amazing experience. Being a family in which one of the children has a spinal cord injury makes vacations hard.  Not only do you need to plan so that activities will be accessible for that child, but you also need to plan around medical appointments, work schedules, school, budgets, etc. all while trying to keep everyone entertained and happy.  It can be stressful!  So when applications came out for CCK TMA family camp this summer we jumped on it.

Camp takes almost all of that stress away.  At CCK we found everything to be accessible for Emmalyn who is 9.  There was a set schedule to follow and guide our family through each day.  Siesta was a perfect time each day for the kids to have some down time and for us parents to sit in the quiet and cool down.

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TMA camp gave our family time to bond and just have fun together.  It was nice being able to reconnect with families we had met two years prior.  It helps being able to talk with them about many of the same struggles we are all facing.  I also found so much joy in watching Emmalyn “fit in” with all the other kids. She seemed relaxed and at ease knowing she wasn’t the different one in a room full of wheelchairs and crutches, at least for four days anyway.

The other very important part about camp was meeting with the team of doctors.  Learning about all the new research being done is encouraging.  Even more important was the opportunity to stop them anywhere you saw them at camp and drill- I mean ask- them my questions.  They didn’t require my insurance card or for me to meet my medical deductible first before I could ask them a question.  To know they are truly listening to my concerns about my child meant the world to me.

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So, after days filled with horseback riding, messy games, archery, woodshop, bowling, boating, cooking, singing, and lots more fun, we are home.  These are memories our family will cherish and for that we are so very grateful.

~ The Vander Wal Family