Tay-Sachs and Hike for Grayson

  1. Share
0 0

Tay-Sachs and Hike for Grayson by Felicia W for Hike it Baby (Image of dad carrying son while hiking with second son on a dirt trail)We knew Grayson was an easy and laid back baby early on. (Easiest all-natural delivery ever!) In a family of hikers, he never fussed when being worn by his mama on the trail, and would squeal with delight whenever there was a breeze. Around the age of six months we noticed he wasn’t progressing quite as he should. Along the route to determining his diagnosis, he had countless blood draws, testing, observations, therapies, and a multitude of opinions as to the cause.

Tay-Sachs and Hike for Grayson by Felicia Kemp for Hike it Baby (Image of a family of four in front of a waterfall, one kid in a carrier)Terrible News

In June 2015, just three months after his first birthday, we received the news no parents should ever have to hear - Grayson has a terminal illness. It’s called Infantile Tay-Sachs and the average life expectancy is three years of age. This degenerative neurological disorder causes regression and the shutting down of all organs. We were told to engage hospice and prepare for the immediate end.

Grayson turned three in March, and we are completely aware that “the end” is slowly creeping up on us every day. We’ve had to carefully craft what we tell our six year-old, who is great at educating others about Tay-Sachs, but doesn’t yet know that it’s a terminal disease. We’ve become the experts on Tay-Sachs as it affects Grayson, informing the doctors of what we need. Just as important, we continue to be as much of the “Kemp family” we’ve always known ourselves to be, which includes hiking as a family and sharing those hikes on our blog, Family Trail Time.

Outside helps us stay normal

Being outside in nature with his family is the only thing we really know that Grayson has always enjoyed. We will get out on trails with him for as long as his health permits. Hiking as a family grows increasingly difficult, as it takes more and more to keep Grayson comfortable. As a result, we often look for paved or handicap-accessible hikes in order to keep him on wheels and have everything he may need. Those hikes we take that are not wheelchair/stroller friendly tend to be shorter hikes than we once took, we wear him in a front carrier, and everything - everything - depends on how Grayson is doing that day.

This life we have is not one anyone wants, but one we have learned to treasure. Hiking as a family keeps us grounded; we get fresh air and exercise and it provides us quality time to focus on each other and the natural beauty of this earth. When the time comes, Grayson’s older brother, my husband, and I will continue to go hiking together and we will continue to carry Grayson. It’s just that instead of wearing him on my chest, we’ll be carrying him in our hearts.

Tay-Sachs and Hike for Grayson by Felicia Kemp for Hike it Baby (image with mom and son in carrier)What can You Do?

From now until Labor Day, my family is challenging everyone to #hikeforgrayson. To do so:

  1. Make a donation to the Cure Tay-Sachs Foundation (CTSF)

  2. Go on a hike and post a photo on FB/Twitter/Instagram with hashtag #hikeforgrayson

  3. And tag @curetaysachsfoundation + challenge at least two friends to hike for Grayson!

Our goal is to reach 1,000 donations this summer. No donation is too small, and all are greatly appreciated. All details and updates on #hikeforgrayson will be on our hiking blog. If any special needs parents (or anyone) would like to reach out to me as a resource, you can email me at [email protected]. See you on the trails! Felicia Kemp

 

Community tags

This content has 0 tags that match your profile.

Comments

To leave a comment, login or sign up.

Related Content

0
Is Your City Involved in the 10 Minute Walk Initiative?
Have you heard about the 10 Minute Walk Initiative?! No? Well, if you think that increasing access to parks and green spaces can lead to better overall physical and mental health, especially during a health crisis, or that your overall quality of life would improve with close access to green space, then you’re already on board with this new program. Photo by Monique Vargas 10 Minute Walk Initiative The 10 Minute Walk Initiative aims to “...ensure that everyone in your city has safe, easy access to a quality park within a 10-minute walk of home by 2050.” That’s not just their mission for already more green-friendly places in the nation like California or Colorado, that’s their promise for the WHOLE COUNTRY. Check out their website to see if your mayor and your city are taking part and if you don’t see their name, do what I did and sign up to stay on top of how to get involved. Maybe you can even convince your mayor to take part. If you’re reading this you are already part of the growing Hike it Baby community and you know that a cornerstone of their mission is to Leave No Family Behind. If you’re changing a diaper, feeding your kid, having a meltdown (you or your kid!), if you can’t do the whole hike or if it’s your first hike we won’t leave you behind! This extends to race, sexual orientation, gender, disabilities, and language. This is of course still our mission but we have realized that many families are being left behind by default because they do not have access. This is unacceptable. We need to do better and that’s why Hike it Baby wholeheartedly supports the 10 Minute Walk Initiative. To ensure no family is left behind, we have to make sure that all families have easy access to safe parks and green spaces. OutGrown works to be the most effective hub of tools, information, and community inspiring all families with babies and young children to get outside and connect with nature. Learn more about OutGrown's mission and how you can get involved. ABOUT OUTGROWN OutGrown is a 501(c)(3) nonprofit that works to create a world where everyone can enjoy the physical and mental benefits of spending time outside. We are focused on creating opportunities and removing barriers to access so families with babies and young children can take their first steps outside. We believe all families have the right to connect with nature, benefit from spending time outdoors and be inspired to a lifelong love of nature. Since its grassroots inception in 2013, OutGrown is a growing community of 280,000 families and over 300 volunteer Branch Ambassadors. More information on all of our programs can be found at WeAreOutGrown.org  EDITOR’S NOTE: We hope you enjoyed reading this article from OutGrown. We’re working hard to provide our community with content and resources that inform, inspire, and entertain you. But content is not free. It’s built on the hard work and dedication of writers, editors, and volunteers. We make an investment in developing premium content to make it easier for families with young children to connect with nature and each other. We do not ask this lightly, but if you can, please make a contribution and help us extend our reach.
0
I Belong Outside: Dineo’s Story
This blog is part of our Elevating Voices series in partnership with      Meet Dineo Dowd.  Dini is one of Hike it Baby’s Board of Directors members, and a former Branch Ambassador.  She’s an author of multiple children's books and has a 7-year-old daughter.  Her family lives in Madison, Wisconsin, but this wasn’t always the case! Growing Up I grew up in South Africa, but did not have a connection to hiking. Hiking was something tourists did. They carried their stuffed packs and headed out, and I always wondered what ARE they doing? What is even IN those packs? Hiking and camping just were just tourist activities, and I wasn’t involved in them at all until moving to the United States. Moving to the United States When I moved to Utah, my husband and I went hiking very frequently and became very outdoorsy. I was hiking regularly, camping all the time, and had an amazing group of friends to do all of these activities with. It was everything, and an important part of my identity.   My husband and I planned to keep up this outdoorsy lifestyle even after the birth of our daughter, Armani. However, once Armani arrived, I found that hiking with a baby was new and different. Those friends that I hiked with didn’t always want to listen to a baby cry, or wait for diaper changes and feedings. One day, my husband and I attempted a difficult hike with the baby, and I slipped and fell, breaking my camera. This left me frustrated and lacking confidence in hiking with my daughter. An important part of my life was gone and I felt defeated.              Enter Hike it Baby One day, I was chatting with a stranger who mentioned Hike it Baby. This mom mentioned a group called Hike it Baby, where moms and babies would go out for hikes as a group. This sounded amazing, and I looked them up for a hike to attend. I ended up going on my first Hike it Baby hike, which was also the first hike for the Salt Lake City branch. Hike it Baby changed my life. I began hiking five days a week with other parents, building my confidence in hiking with my daughter and spending time outside. Armani has had the opportunity to grow up outside, thanks to our adventures together and my deep desire to raise her with a connection to nature. In spending time in nature, I've learned the most important piece to getting outside with kids is just that – Get outside! Worry about the gear later. People get overwhelmed with all of the things and gear to get outside, but it usually doesn’t matter – just start going outside. Simply open the door and start exploring together. There are so many benefits to taking those steps outside and embracing nature. By stepping out of my comfort zone, I've had the opportunity to embrace nature, meet amazing new people, and travel to awesome places (next up, Mount Kilimanjaro!). Inclusivity in Nature When I first sought out diverse children’s books about hiking, I found that there simply were none on the shelves. I wanted Armani to be able to see herself in nature, and so I wrote a children’s book to make that happen. I'm now a published children’s book author with multiple titles, diverse books and is helping children everywhere see themselves in nature! I may have started with Hike it Baby Salt Lake City, but have since been involved in multiple Hike it Baby branches and my advice is that there are so many resources and ways to be inclusive, there is no excuse not to be inclusive in nature.  Just make it happen!       Watch Dineo's Story Here   ABOUT OUTGROWN OutGrown is a 501(c)(3) nonprofit that works to create a world where everyone can enjoy the physical and mental benefits of spending time outside. We are focused on creating opportunities and removing barriers to access so families with babies and young children can take their first steps outside. We believe all families have the right to connect with nature, benefit from spending time outdoors and be inspired to a lifelong love of nature. Since its grassroots inception in 2013, OutGrown is a growing community of 280,000 families and over 300 volunteer Branch Ambassadors. More information on all of our programs can be found at WeAreOutGrown.org    EDITORS NOTE: We hope you enjoyed reading this article from OutGrown. We’re working hard to provide our community with content and resources that inform, inspire, and entertain you. But content is not free. It’s built on the hard work and dedication of writers, editors, and volunteers. We make an investment in developing premium content to make it easier for families with young children to connect with nature and each other. We do not ask this lightly, but if you can, please make a contribution and help us extend our reach.