Today, my son’s steroid inhaler broke (my husband somehow smashed it in the trunk of the car). I was so upset that we would have to shell out yet another 100 dollars to get a new one, and that’s when I went to get the mail and saw the bracelets. I became excited, and my day had suddenly become okay.  The R.A.R.E. Project 7000 Bracelets for Hope™ program gave me that glimmer of hope I needed.

We have yet to find anyone else with the same deletion as Connor, and he takes life with stride. I am so proud to display this bracelet in honor of him and in the hopes of raising awareness of chromosome 21q deletion.

A chromosome 21q deletion is a rare genetic condition, where a part of the genetic material that is typically present in the body’s 46 chromosomes is missing. Depending on the specific genetic material missing, the risk of birth defects, developmental delays and learning difficulties become increasingly prevalent.

Connor struggles daily to do what I can do with ease, like eat with a spoon, but my boy is braver then I will ever be. If wearing a bracelet will help raise awareness and hopefully bring on more genetic testing and research, then I say it is the least I can do.

Connor refuses to wear anything on his face or hands/wrists, so my husband has decided to wear the friendship bracelet in his place. It is with pride I wear this bracelet for Connor.

33 thoughts on “Connor, a Brave Little Boy with Chromosome 21q Deletion, Struggles with Menial Tasks”

  1. Crystal Ray says:

    My daughter is believed to have a 21q deletion. She is 18 months old. i have searched and been to so many doctors and geneticists. i would like to find someone with a similar chromosome deletion.
    Please email me when you can. Thank you!
    Havynsmom1@aol.com

  2. Takiyah Glaze says:

    Hi!

    My daughter is 2yrs old and also has a partial deletion on Chromosome 21. I would love to connect with you and other parents. I can share what we’ve been learning on this journey and hopefully learn from you as well.

    My email address is Psalm1195@verizon.net

    Thank you!

  3. Jill Johnson says:

    Hi,

    Just ran across and saw that both of you have children with a deletion on chromosome 21. I would also like to connect with some parents that have children with similar deletions. My daughter is 7 months old:-) I see both of your email addresses above but wanted to know if it is alright to connect with you. My email is jill_r_j@yahoo.com. Thanks!!

  4. Takiyah says:

    Absolutely! I would LOVE to connect with other parents who have a child with the same deletion. It’s SO rare so having that support is necessary, in my opinion. I will send you a quick email and look forward to your response!

  5. debbie says:

    Hi my daugher to has 21q deletion she is 7 years old have yet to meet anyone who knows anything about this syndrome, if anyone would like to get in touch with me please do my email address is michael_tallant@hotmail.com

  6. louis says:

    Hi I am a friend of debbie’s , and I see debbie’s daughter everyday and she is the most special little girl I hav ever met, she smiles with the biggest brightest smile I hav ever seen , she luvs to hear us talking and jus listen and laughs out loud when we talk to her and she luvs to hear unusual noises ,, We luv her and luv the warmth of the love she brings in or life she is an inspiration in our life , Debbie is so amazing and blessed with a beautifull daughter !!!
    I just thought I wud throw this message in here for Debbie and co !! To support them and those who hav been blessed with amazing chirldren with 21q.
    I hope u dont mind <3

  7. kristina says:

    Hi my son has partial deletion of chromosome 21 too. I was wondering if there is a message board or something to talk to others and get more info.Thank you

  8. Takiyah says:

    Hi Kristina,

    I don’t know of any message boards but if you find one let me know please! I’ve thought about starting one…but I don’t know if I have to time to manage and maintain it. I will pray about it and if I start one I will let you know. How old is your son?

  9. Kristina says:

    Hi Thank you. My son Salvatore is going to be 4 in Jan. We found out when he was around 18 months. Hes doing good…..he has speech delays and other delays, hes small for his age and small head. He goes to school and gets speech, ot, and pt. No medical problems. We watched for for seizures and his heart when he was little but everything ended up fine. I would love to find out more info but the web is limited and the docs dont know much. How is your daughter?

  10. Takiyah says:

    My daughter just turned 3 at the end of July. We found out after she was hospitalized for a month last summer. However, we already had her in therapy for her development as well. She does have medical issues and has had 4 febrile and one non-febrile seizure since she was around 20 months. She also has a g-tube because she stopped eating last year, but she’s slowly trying to taste and drink again so we thank God! We now do at-home therapy with the NACD program, which covers all areas of development. Where are you located, United States? We live in Maryland.

  11. sarah says:

    Hi Kristina:
    I have a private support group on face book for 21q deletions. There are about ten f us there. 🙂
    I’m glad to see all these responded to this about my son Connor. 🙂

  12. sarah says:

    Hi Debbie
    I don’t get responses to this which is weird considering I wrote it about my son. Lol
    Would love to get in contact with you. 🙂
    My email is moodys77@gmail.com

    Sarah

  13. sarah says:

    Hi Kristine,
    Thank you for responding to this blog about my son.
    I do have a private group on Facebook for 21q deletion.
    Also there are others but not for 21q specifically. Would love to chat.
    My son’s deletion is Rather large. 🙂
    Moodys77@gmail.com

  14. Nicole Van Matre says:

    Hi, I have a 4 year old son also born with 21q and for years I have been looking for others with children that have 21q to connect with. I started to cry when reading this as i have felt so alone in this journey as you all probably have felt as well! I would love to connect with you all!!! How do I join the FB group?

  15. kristina says:

    Really…..how do I find the group on Facebook…I would love to join? Thank you

  16. kristina says:

    We live in Brooklyn NY

  17. sarah says:

    Kristina, email me and I’ll be happy to add you to the fb group. 🙂

    I’d love to learn about your son. There are about 11 parents in the group and we all have kids with different break points.

    Sarah
    Moodys77@gmail.com

  18. Lauren says:

    I am interested in joining your facebook group of parents. My son has a deletion in 21q and a duplication in 22q. I am not sure how old this thread is, but if you see this my email is laurenciciretti@gmail.com. Thank you in advance.

  19. debbie says:

    Hi, everyone just thought I’d post here I haven’t loged on for awhile hope all your kids are doing well, well I was thinking can we all plan to meet up sometime in the near future I know we are all from different parts of the world but I would travel and I’m sure others would to, I would absolutely love to meet all your beautiful kids I don’t know just thought I’d ask, I just want to say a big thanks to Sarah for creating this page and happy new year to your all x 🙂

  20. yilebi says:

    Hi my name is Yilebi and am glad that i found this forum with parents that has babies same syndrome as my litle 2 months old girl.I had her 2 months ago and at birth we found that she was a litle special angel with 21q deletion and partial trisomy 18….please contact me back via email i will like to hear more about this syndrome and place my comments to help another ones…thanks
    My email is:yuryile_88@hotmail.com

  21. Tanya says:

    Hi there I have a son with the 21q micro deletion. He is 6 years old and started school this year. I’d love to have more info on the friendship bracelets. I also have a daughter with 2p micro deletion. And I think she would benefit from having a bracelet that says she’s not the only one.

  22. christine says:

    Im interested in the fb group too. Our daughter has a 21q deletion. Until today I’ve had a terrible time finding info.

  23. sarah says:

    Christine,

    Hi. Shoot me an email about your child. Ill glady add you to my fb group

    Moodys77@gmail.com

    Sarah

  24. Hilde Marie Johnsen says:

    Hi my daughter Louise(3year) has 21q deletion.
    I had a struggle against health care and doctors in Norway since my daughter was born 3 years ago. When she was born, I asked the doctors why she looked like the way she looked. They just said that they did not know. Health personnel at the health clinic for children, sayd that she probably had ADHD, or that there might be something wrong with the way I was with her​​, and sent us to psychologists and other nonsense. Psychologists said it was shoced, and said that there is something wrong here, that there is something wrong with the child. We were sent to physiotherapists, but no one would touch her, and sent on in the system. The doctor sent the referral to specialized health service, when she was 2 years, but the case was dismissed. So I gave up and lost faith in myself. Maybe i was crazy, maybe there was nothing wrong with my child.
    She had spasms until she turned blue, she woke up screaming in pain every night, she has a flat backhead, and short neck, and alot of pain in her back and neck, she threw up all the time, crying all the time, screamed when we went to visit, screamed when we got visit, she could not sit or stand before she was 1.5 years old. She was always sick. Kindergarden and public health clinic accused me of over protect her and make her sickly. She had constant ear infections, with ruptured eardrums. Always a cold, with lung infections.
    Even my partner doubted me. But finally after x number of physician visits, we got an appointment with a specialized health service and gene researcher.
    The battle was over, the answer came, I won a bitter and tragic struggle. “prize” was the answer that my daughter can finally get the help, she can finally be allowed to be understood. She is not hard,she is not bad, she is not spoiled, and I’m not crazy.
    She has 21q deletion syndrome. So now she has to take alot of other test whit all kind of docktors.
    The doctors told us that she is the only one in the world that miss the genes that her cromosones are missing. We feel very lost and alone in this, but its “good” to see that we are not totally alone. Not good, but…..
    So pleas let me also know if there is anyone out there who can give me more information, or shere experience about this.

  25. Fionagirl says:

    Hi there. I’m so pleased to find this thread! My husband and I just learned that our son has a partial deletion on his 21st chromosome. We are desperate to learn more and connect with other families whose children have the same diagnosis. I would love to be a part of the Facebook group, too. Thank you!

  26. Tracy says:

    Hi.
    My daughter Jodie will be 15 in Augus t and she has a 21.1q micro deletion which means she has a bit of dna missing from one of her chromosome 1 which has caused delayed development and delayed speach.
    She is a joy and I wouldn’t have her any different .
    There is a site that is called Unique which is brilliant and has given me so much informaion on my daughters condtion and in a way put my mind at ease.
    I believe my daughter will be whatever she wants to and achieve in life like any other child.
    Would love to join your facebook page if at all possible.
    Tracy (Jodie’s mum)

  27. Jenny says:

    My Sons connor and Austin also have this genetic condition.. I would like to know what all you guys have experienced with this.. For mY son Connor, He has Autism, and is slightly mentally retarded He is 11 almost 12 and reads @ a 3rd grade level now, He is having trouble opening his arms all the way he use to have full movement but now it seems his bones are making it to where he cannot i just made him a drs appointment to see what can be done.. He also has symptoms of Glaucoma in his eyes so we are going to see a specialist for that. For my son Austin who is 7 he also suffers from Chromosome 21 section Q deletion it means he has a bicuspid aortic valve, His teeth are also decaying from the inside out, and he Also suffers from Autism and is very stimmy.. Austin also suffers from Asthma and health wise hasn’t always been too good…

  28. Devon says:

    Hi, my son is 3 years old and was diagnosed at birth with a chromosome 21 gene deletion, he is missing 15 genes. I do not know of anyone else with this condition and would love to talk to other parents. My email is dzeigler816@yahoo.com if someone would please reach out.

  29. I enjoy reading an article that will make men and women think.
    Also, thank you for allowing me to comment!

  30. Pissy Gayter says:

    bit of a cunt if you ask me

  31. TANIA GRAY says:

    Hi My daughter has the same 21.1q I was wondering if we could chat sometime!

  32. jackie says:

    hi there my son at 16years has been given a name for his disability. which is 21qand 22.11 deletion my son is fully disable . my question is i have just found that blood disorders like non hodkins limphoma can be a issue now I am starting to worry that this may become a problem as my father died from non hodkins just wondering if anybody has had the same thoughts. I will have him cheaked of course . I am just curios thanks jackie

  33. riyad alhafeez says:

    hello we have daughter 13 year old she has 21q deletion. she was diagnosed with ppd-nos autism at age 2. she is still non-verbal. she regressed at age 18 months. she is improving slightly over time will love to connect with parents with del21q issue. our email riyad_hafeez@hotmail.com best regards riyad

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