Bennie has been fighting for life since 6 weeks after conception. Mom was gravely ill and hospitalized the whole time. When Ben was born, he wasn’t breathing.

He spent 48 hours on a ventilator. He spent 17 days in the NICU on oxygen and a feeding tube. Then he was sent home. For 11 months, we watched him throw up constantly, lose weight, fall off the growth chart, have pneumonia’s every three weeks and go in and out of the ICU on high flow oxygen.

We came very close to losing him several times. But then he ended up at children’s hospital. There they discovered he needed a nissan. His stomach muscle wasn’t working and he was asparating food and saliva. He had a major six hour stomach surgery 10 days after his first birthday.

He also had 17 blood tests. And the diagnosis was Chromosome 14Q deletion. We were able to obtain a study of infants and toddlers in the UK. There are no long-term data as it is so new and rare. We don’t know his future.

We know his lungs still at 2 and 1/2 are fetal size. They may or may not grow to adult size. Colds will always be serious for him. The only organs not affected are kidneys and hearing. We have to watch for seizures at some point in life.

He has 14 specialists and five therapists, a wheelchair, a back brace, and ankle braces. He may or may not walk, talk, stand, eat orally, and is thus tube fed. He has had eight surgeries, thousands of x-rays, four ambulance rides, hundreds of hospitilazations. He can’t even have dental work in the office.

It has to be in the hospital. We won’t know his delays acedemically until much later when they can do an IQ test. His hypotonia gives him painful constipation. And he may or may not need back surgery some day. But through it all he tries so hard to smile and be happy.

He loves to cuddle and gives the sweetest kisses. He is starting to notice cartoons and loves music and dogs barking. He is very close to his parents and siblings and started rolling at 2 and 1/2. He is finally hovering around 25-26 pounds and back on the growth charts. Huge, huge milestones. He is such a good boy and so loving through it all. We just don’t know what the future holds and this is a very tough pill to swallow. Lots of prayers and living day to day enjoying every minute with him.

20 thoughts on “Brave Bennie’s Battle with Chromosome 14Q Deletion”

  1. Sandra says:

    Hello, my name is Sandra and I just came across your post. My son, Nicholas, is 16 years old and has a chromosome 14q deletion. Reading your post brought so many memories back and I’d love to talk and share stories. I can say even though he was in the hospital at least one week a month for years he is pretty healthy, walking (with leg braces), talking (somewhat hard to make out at times but can definitely get his point across) and doing great in school and social settings which we thought would never happen!

    I know how hard it can be at times and the unknown is so frustrating but you and your family will be in out thoughts and prayers

    ~Sandra

  2. Luidmila says:

    Hello! My name is Luidmila. My son Maxim has a chromsome 14 q deletion. He is two years old. Since his birthday Max often fell ill, once he had strong cough for three months. A year ago Max had a strong exhaustion as a result of another weakness. Because of this bagan attaks of apnoea. Our neuropathologist sad it was convulsive ativity. We found a spesialist of acupuncture and chi kung. Thanks to this doctor we removed attacks. This doctor also cured our intra cranial pressure.
    Some months ago we decided to try stem sells. As a result Max doesn’t fall ill so often and even if he does he recovers in a day or two. Also a coplex of cells and acupuncture improves intellectual and physical development of our child.
    It is difficult to have a spesial child. But we love our childen such s they are.
    Max is the third child in our family (his elder brothers are healthy). He loves his brothers very much. To my opinion communication with other children in a family (brothers or sisters) improve development of such children as Max. Also he reacts well on animals. We have a dog and a parrot.
    Sorry for my english. It”s a foreign language for me.

  3. Mary pomo says:

    Oh Sandra have a a million questions for u. I hope u see this. Bennie has a lot of sinus issues right now that they can’t figure out. Tons of gagging and weight issues. Did ur son have this? When did he walk and talk? Can he eat? Tube fed? Does he go to school? Preschool wants bennie this fall but I’m scare. Please check out his fb page prayersforbabybennie/chromosome14qdisorder. Thanks.

  4. Mary pomo says:

    Sandra I hop u see my post I have on here.

  5. Heather Tetreault says:

    Hello Mary,
    I stumbled across your post and wanted to share that I also have a 6 year old son with chromosome 14 q deletion syndrome. I Know what you are going through. My son is pretty healthy but has global delays. Love to share story’s or try to shine some light on unanswered question.

  6. Jem Sarna says:

    Hi,
    Our 3 year old son has a 14q deletion, he has global developmental delay, low ears, poor eyesight, coloboma, epilepsy, hypertonia, hypermobility. He is non-verbal and is just taking his first tentative steps (eek!). As this condition is so rare it would be great to share experiences to lean how others have supported development and undertaken medical interventions etc.
    Jem

  7. Princess says:

    Hello everyone !
    I also have a little with deletion of the 14th chromosome. My Javen is 5 years old and has some very similar traits as these other angels. I to don’t know what the future holds for my son but I’m glad he made it through a very rough start. At this point I just want him to be happy. He has difficulty sitting and walking but therapy has helped so much ! He says mom which is more then good enough for me 🙂 but he also uses sign to communicate. He has a older brother & younger brother whom he loves and adores. Any insight on his condition is comforting. I hope the best for all your little ones. stay strong!Thanks everyone!

  8. jillian says:

    I too have a son who has chromosome 14 deletion …he is now 3 yrs.and still is behind quite a bit..he also has cerebral palsy,he doesn’t walk or talk..he eats by himself..but I notice his frustration now that he’s getting bigger..he bits himself..i don’t know what he wants half the time..he has therapy (3) sessions and we are trying to get him to be mobile enough to use equipment but he is so tiny..he is a good baby and happy too..but I lose focus on the positive with so much negative …I’m inspired by some of these post but praying for all of us..

  9. jillian says:

    There is more he also has ear tubes and goes to school ..he hates loud noises and love dogs he stays with a cold..and ear infections..he had a rough start too ..swallow test ,xrays ,MRI ,ext..

  10. Liudmila says:

    Hi, i wrote here about my son Maxim and his 14 chromosome deletion. I want to share information with other parents about our children. If you are interested in please write. My e-mail is miela@mail.ru

  11. Marija says:

    Halo, my son has also deletion on chromosom 14. He is 4 years old and a very good boy. He can walk and talk a little bit. He have big problems with his eyes at moment. Sory for my english it is not good!

  12. Hello my name is Kelli, and I have a 10 year old daughter with a deletion of chromosome 14. She was born at 6 months, stayed in the nicu for 4 and 1/2 months. 16 weeks of those she spent intrabated. She came home on 12 different meds and a ng tube. She did not walk until the age of 3, which is when we noticed the “glinch” in her walk. After 3 or 4 steps she would stumble…almost a drunken type walk. She has congenital hypothyroidism which is controlled by meds. We begin to take her to a neurologist after years of occupational therapy and time spent in shoe braces. The docs preformed mri and a barrage of testing…still finding no reason as to why she walked with a glinch and experiencing other learning setbacks and motor skills dysfunction. It was until my daughter turned 8 years old did we have a doctor come up with genetics testing…and sure enough there was a huge chunk missing from her 14th chromosome. I was told by the doctor that he didnt know what to expect upon the first time seeing her. There is where I learned how truly blessed she is…because alot of the medical conditions associated with this diagnosis, my daughter does not have. She walks with a glitch, she has never took off running, never jumped rope….however she is a very vibrant and bright child. She will be in the 5th grade this coming school year. She is in general education with special education pull out. She loves to sing and dances as if no one is watching. I would love to connect with some of the moms here…with having such a rare condition its difficult to discusd with other moms…they just dont get it. My battle is that my daughter look perfectly normal but is very different in many ways. I would love to talk and share anything possible about this. Ive felt very alone with this and hoped that one day I could find some type of support for my daughter. Our children are uniquely made and we should stick together and be the village for them.

  13. Sandra says:

    Hi Kelly!

    My name is Sandra and my son Nicholas is now 18 with a chromosome 14q deletion. He had many of the same issues as your daughter yet he was diagnosed at two months. We were actually told he would never walk, never crawl, and never communicate and at one point they thought he would never make it out of the hospital. We are very blessed that they were so wrong as he was able to do all of these, with significant delay. He is very happy and outgoing but has some behavior issues more in large social settings and he has epilepsy and adhd. He never stops moving and if it weren’t for all the just dance wii games he would probably jump out of his skin. Absolutely loves music and dancing like your daughter. Would love to talk more so feel free to email me at slmapus@live.com

    All thes best,
    Sandra

  14. Janessa says:

    Kelli, my daughter is 4months old and has been diagnosed with a 14q deletion. If you could email me maybe we could share stories.

    Janessa.kee@gmail.com

  15. Liudmila says:

    Hi, I wrote about our son Max and his chromosome 14 deletion. His karyotype is 14q(13;22). This means that a piece of chromosome from 13 to 22 is missed. If you have a similar case please write (miela@mail.ru) me to share methods of rehabilitation.

  16. Amy Albrecht says:

    My nephew has the terminal 14q 32.31 deletion. He is months old and I’m helping my sister find somebody with experience with a similar deletion.

  17. Amy Albrecht says:

    My nephew has the terminal 14q 32.31 deletion. He is 6 months old and I’m helping my sister find somebody with experience with a similar deletion.

  18. Farzane says:

    Hi, My Daughter has the 14q 32.31 deletion, She is 15 month old. Please contact me, so we can share our Information.

  19. Farzane says:

    I’m Farzane, Mom for a beautiful 15 months old angel.

    She was born at 28 weeks and later she was diagnosed with 14q.32.31 deletion. We have lots of challenges and health issues with her and I’ve felt very alone with this and hoped that one day I could find some type of support, it is a reason that I’d like to connect with other parents with same deletion.
    I could not find any Facebook pages, Telegram Pages,… in the net ( If you are aware for any, I’d really appreciate if you add me to that page), I’d like to gather all parents of these angels together. It will be more easy to go through this journey together.

    We are living in USA, please let me know if you are interested.

  20. Farzane says:

    My Email Address is Farzane.88@yahoo.com

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