LIVING WITH A RARE GENETIC DISEASE | MY JOURNEY WITH ALSTROM SYNDROME

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Hi everyone! This was not an easy video for me and my mom to make but we hope you will watch it so you can learn more about my illness, Alstrom Syndrome.
If you have any questions for us, please leave them in the comments section.
We appreciate all your support.
If you'd like to learn more about Alstrom Syndrome, click on this link: www.alstrom.org/what-is-alstr...
My Amazon Birthday Wishlist: www.amazon.com/registries/gl/...
Send stuff for me to unbox:
Caleb Adams
PO Box 185
Salyersville, KY. 41465
Follow me on Instagram or TikTok:
/ cdadams1004
www.tiktok.com/@cdadams1004?i...
#alstrom #alstromsyndrome #genetic #syndrome #aboutme #journey #myjourney #geneticdisease #rare #raredisease #Caleb #lego #afol #vlog

Опубликовано:

13 сен 2023

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Комментарии : 85

@g_mae05 9 месяцев назад

I’ve always been so grateful to be your friend Caleb. I remember in middle school when we first met, I was so happy to know that somebody else had come to KSB from eastern Kentucky too, and that was the first thing we bonded over. It felt so nice to not be so isolated, and I enjoyed when we could sit while the others did things outside. You were always so positive despite everything, and I always enjoyed listening to your funny stories and your Lego building show and tells at lunch. I’m so glad you’ve gotten your channel and are educating people, because I wouldn’t have ever known. Thank you so much for sharing ❤

@cdadams1004 9 месяцев назад

Thank you, Gracie. You are a good friend and I missed you when you left KSB. I hope I see you soon and our other friends and I hope you have a good time at school. Me and my mom might come there to see you some time and she can take us out to eat.

@kellycoldiron1051 9 месяцев назад

Thank you guys so much for sharing your story with us! I love when Caleb said you were just trying to be a good mom! He is definitely right, you are the best mom!! ❤️

@cdadams1004 9 месяцев назад

It's true. Thanks for watching.

@Tokillabambi 9 месяцев назад

Keep it up man, you're doing incredible things! I was just diagnosed with Autism, adhd, and ocd this year at 30 years old, and have been struggling to cope. Watching your videos keeps me staying positive!

@cdadams1004 9 месяцев назад

That's very kind of you to stay. Just take it one day at a time.

@tonysoames1369 9 месяцев назад

That must have been a very difficult video to make, I knew at some point there would be tears. You are both so strong.

@cdadams1004 9 месяцев назад

Thanks for watching. Mom can never hold it together when she talks about me.

@user-sh9fv3dl3z 9 месяцев назад

Caleb, you are awesome….and Jody, you are remarkable. A true definition of a mother’s love. You two make a great team. Keep on doing exactly what you are doing. God bless you both. ❤❤

@cdadams1004 9 месяцев назад

Thanks so much!

@user-gd9dh1xi7q 9 месяцев назад

Caleb you are so strong!! Praying for you we have a nephew, he is 53 now and blind. He has Lawrence Bahl syndrome. Had 6 toes when born. He has a very strong mother too and a step dad who has been God sent. Praying for you

@cdadams1004 9 месяцев назад

Thank you!

@jodyminix429 9 месяцев назад

This is what they originally thought Caleb might have when we visited Cleveland Clinic.

@SoBricks 9 месяцев назад

I'm so glad I found your channel! Thanks so much for all you do. Caleb and mom, you are both incredible!

@cdadams1004 9 месяцев назад

Thank you so much!!

@user-fe5zo1ro1f 6 месяцев назад

Thank you for sharing this video, we are currently in the process of getting my 4 year old (104 lb 4+ft. tall) daughter diagnosed with Alstrom Syndrome, I have been trying to research as much as I can since with what we have so far but because ot is so rare i havent been able to fund much info. We have so many doctors appointments still in the coming new year, and its getting a bit overwhelming, i hope you continue to post, it would be very helpful to me and my family on this journey with our youngest. I am sorry your son has to deal with this aswell and i hope life is being kind to you guys, Thank you again !

@cdadams1004 6 месяцев назад

I'm glad you found this video. You can find my mom on Facebook and she can talk to you more - look up Jody Minix. She comments a lot on my Instagram posts and my Instagram is linked in the description box of my videos. I have a lot of appointments and it can be overwhelming. She is good to talk to about it all. I hope you all had a Merry Christmas!

@bretttyner2796 5 месяцев назад

Caleb is such a strong, amazing, and courageous young man. May God bless and protect you both in this journey that you are on.

@cdadams1004 5 месяцев назад

Thank you so much. I appreciate it.

@Kbrook11 9 месяцев назад

I know you know Caleb, but you’ve got a great momma. Thank you for sharing with us.

@cdadams1004 9 месяцев назад

Thank you!

@user-js3ox1xm8f 9 месяцев назад

This video has had me in tears 😢 Caleb is such a sweet and special young man that I love very much ❤️. Jody, you are a true inspiration to us all. Continuing to pray for the both of you ❤️🙏🏻.

@cdadams1004 9 месяцев назад

Thank you so much!

@larahkendall1635 9 месяцев назад

Thank you for sharing part of your story, Caleb. You continue to amaze me, even in the short amount of time that I have known you, with how you always continue to push through.

@cdadams1004 9 месяцев назад

Thank you for watching!

@EnhanceTheSeasonswithKaren 9 месяцев назад

Caleb, you are a precious, amazing young man! You make your mommy so proud! Hugs sweetie!! Karen

@cdadams1004 9 месяцев назад

Thank you and thanks for watching, Karen.

@armyofone8537 9 месяцев назад

You guys are strengthened from GOD. I’m praying for you both. Much love Caleb! You’re awesome.

@cdadams1004 9 месяцев назад

Thank you so much!

@GuccieSk8ter Месяц назад

Praying for this beautiful family 🙏

@cdadams1004 Месяц назад

Thanks so much!

@dedriacarpenter9895 9 месяцев назад

What a special pair you two are. You are inspiring to many. Love you!❤

@cdadams1004 9 месяцев назад

Thank you so much! We love you, too.

@nicolemb105 2 месяца назад

Thanks for sharing. You had me crying too. I love Caleb’s positivity and mom you are doing an amazing job!

@cdadams1004 Месяц назад

Thank you so much!

@jodyminix429 9 месяцев назад

Love you more than anything!

@cdadams1004 9 месяцев назад

Love you, Momma.

@xxxxxxxxxx166 9 месяцев назад

I love watching your videos. You two are so special and sweet. I felt every word you spoke, and wish you were local to me so I could offer my help. Jody, you're a wonderful mom, and Caleb, you're a spectacular son. Continue being each other's favorite people, and please continue to share your lives with all us fans. Big hugs! ❤

@cdadams1004 9 месяцев назад

Thanks for saying such kind things and thanks for watching.

@lauren.237 9 месяцев назад

Thank you for sharing all this information it takes so much courage from both of you to do this. You are truly my super heros.

@cdadams1004 9 месяцев назад

Thanks so much for watching it. You're my hero for putting up with Uncle Curt.

@scrappedbits 8 месяцев назад

I stumbled across your channel today and this video has touched me deeply. You both seem like such lovely people and I just can’t stand that you have to deal with this. I have had a couple of close family members that had serious health issues and it took a lot of strength to get through and to just continue to keep going. I can feel the love you have for each other coming through these videos and am so glad you have each other. I hope that you both can have a bright and happy future. I can’t wait to watch the rest of your videos now. Thank you for sharing all of this with us. I was crying along with you at the end.

@cdadams1004 8 месяцев назад

Aww..thank you for the kind words. It is a difficult time, but we get through it. I'm in the hospital right now for the fifth time this year, but this comment cheered me up. I hope you enjoy my videos. I try to do at least one LEGO video each week and one that's different (either a Taste Test Tuesday or vlog). Thanks for being here.

@David-Brick-film 9 месяцев назад

Love the thumbnail and stay strong always enjoy ur day with a smile 😊

@cdadams1004 9 месяцев назад

Thank you. I do my best to always be positive.

@user-wr6nm9mf9m 9 месяцев назад

I just watched and am so emotional. Caleb has always been so special and has the best heart. He has also been blessed with the best mother. I pray Caleb continues to be able to do the things he loves for a very long time. Bless you both ❤

@cdadams1004 9 месяцев назад

Thank you, Mrs. Howard. My mom keeps crying too because she said she will be messed up for a few days now but I've just been watching my shows.

@user-gq2ps8yr6o 9 месяцев назад

Keep fighting you two! You’re doing an amazing job Jody! Praying for y’all and hoping a billionaire sees this and finds all the things for y’all!

@cdadams1004 9 месяцев назад

That was nice. I hope if a billionaire finds me they take me and my mom to Paris with them on their next vacation. Or, to the Plaza so I can be like Kevin in Home Alone. ha ha

@JamieHelton-kz8bm 9 месяцев назад

We love you so much, sweet boy. Always praying for you and your amazing mama ❤️

@cdadams1004 9 месяцев назад

Thank you, Aunt Jamie. And I love you and Uncle Brian and my cousins.

@user-wz9op6hi1u 4 месяца назад

Prayers for you, Caleb!

@cdadams1004 4 месяца назад

Thank you very much.

@silentsmysound4040 9 месяцев назад

You both make such a great team

@cdadams1004 9 месяцев назад

Hope it helps someone. Thanks for watching!

@user-bs5zu7wc1t 9 месяцев назад

I love you both so much. Aunt Tabby will take a while for this one to settle within me. My heart just loves you guys so much!!

@cdadams1004 9 месяцев назад

Love you, Aunt Tabby!

@StefanieHunter-Hammonds-gk6ym 9 месяцев назад

You’re Awesome

@cdadams1004 9 месяцев назад

Thank you!

@PlayerPlayz69 9 месяцев назад

2nd missed your posts

@cdadams1004 9 месяцев назад

Thanks!

@Maryannrowe 9 месяцев назад

BLESS, I love you both! ❤️

@cdadams1004 9 месяцев назад

Thank you for watching!

@feliciaestep297 9 месяцев назад

Love you two!!

@cdadams1004 9 месяцев назад

We love you.

@SilverCherryStudios 9 месяцев назад

You guys are so strong and amazing!

@cdadams1004 9 месяцев назад

Thanks so much!

@OGMrEverything 9 месяцев назад

Dude you are amazing, I will pray for you

@cdadams1004 9 месяцев назад

I appreciate that!

@user-kf1sq8sq3v 8 месяцев назад

Thanks for sharing your story! I can see the love you two have for each other. Caleb you are an awesome young man, with an incredible mom! Love and prayers for both of you❤️

@cdadams1004 8 месяцев назад

Thank you so much!

@XianneTV 9 месяцев назад

hello! God Bless you always! keep inspiring us and sharing great content! good day!

@cdadams1004 9 месяцев назад

Thank you!

@viviancrump9476 4 месяца назад

Thank you for sharing.

@cdadams1004 4 месяца назад

Thanks for listening!

@user-kj5tb7ny7i 9 месяцев назад

Granny loves you both so much

@cdadams1004 9 месяцев назад

Love you, Gran.

@ashleyjustice9150 9 месяцев назад

Caleb, you are amazing and you have the best mom! She takes such good care of you and loves you so much. ❤You’re both an inspiration, that’s for sure. Lifting you up in prayer.

@cdadams1004 9 месяцев назад

You are so kind!

@user-kj5tb7ny7i 9 месяцев назад

Gran loves you bunches

@cdadams1004 9 месяцев назад

Love you.

@user-kj5tb7ny7i 9 месяцев назад

I know this was hard to share

@cdadams1004 9 месяцев назад

It was.

@user-kj5tb7ny7i 9 месяцев назад

I hate this horrible disease with everything in me