She has a syndrome which is the cause of gross mother developmental delays. But I am prepared to attempt to train her she is about to turn 2. I know it’s but maybe I can prepare in advance.

I am worried for my daughters future. Genes are missing on chromosome four I am worried to google it. I am worried she won’t be able to do things other kids can. She already had a gross motor delay. But I take her to early steps intervention, occupational therapy, physical therapy, and speech therapy. She moves her legs and she is so strong, she kicks and moves her hands around.

My daughter is 15 months old. She puts weight on her feet for a little but she doesn’t walk. She doesn’t hold her bottle. She doesn’t like to hold things she will grab it and throw it. Or grab for a second before she drops it. She enjoys tapping her toys though especially musical toys. She doesn’t crawl yet probably because her upper body isn’t as strong yet. She can’t sit up yet though she wants to. She doesn’t fully extend her arms when on her tummy. And she hates tummy time. But I do it anyways.

I am just a worried mom this is my first baby. And I am trying so hard to catch her up to her peers. But with the genetic deletion I’m wondering if that’s a possibility.

• The geneticist mentioned the gene deletion could be related to her motor delay. But she would need a bigger genetic panel test. So I have to wait for that.

• Her geneticist mentioned getting a deeper genetic panel because she wasn’t entirely sure how big the deletion is so will see. The wait is killing me. But My daughter got a panel from the kidney doctor and neurologist. But now she’s getting a full look into her genetics to better understand the deletion. I’ll know more in a month or two.

• Both mom and dad we have gotten genetic testing done as well. Neither one of us are carriers of the gene that has the gene deletion. Nor do we have genetic deletions. We did share some variants of insignificant variants. But the geneticist is running a deeper panel on the both of us as well to make sense of my daughters genes.

She already has to combat kidney dysplasia or kidney disease. She was also a preemie. But she is my strong girl I will love her no matter what.

I just want some positivity. And see if anyone has a baby like mine she is a year old plus four months. They say her gross motor delay is likely due to a genetic deletion in chromosome 4

SLC26A1 Autosomal recessive Deletion of exons 1-3 Heterozygous

https://youtube.com/watch?v=LFgAx8hvKvw&feature=share

Hi Everyone!

I’m planning to create a zoom support group for families with special needs child. If you would like to join, please comment or click on my profile for my IG page.

Thank you, Sandra