My son Tanner was born Jan. 27 2005. He was beautiful, a 6lb 12oz little boy with all 10 fingers and 10 toes (I counted to make sure he was whole!). He was perfect!

When he got home about a week after birth, he started getting congested and he was always sick. We were always at the doctor, getting antibiotic after antibiotic, running humidifiers all the time, and keeping him propped up so he could breath better. Soon after that, it was dealing with constipation. Then he wasn’t doing things most babies could. He wasn’t able to sit up at five or six months, and he just laid there.

So off to the specialists we went– but by this time he was still so sick from the congestion all the time he had already been in the hospital and was on oxygen full-time all before he was one years old. So we get to a children’s hospital where it is a whirlwind of specialists, and soon we learned that he is missing his 9th chromosome— whatever that meant.

But still dealing with him being so sick, we were in and out of the hospital all the time from pneumonia and ambulance trips to the children’s hospitals and week long to longer stay after stay. Nothing is worse than hearing a doctor say they don’t think your child will make it through the night.

You hold your son all night long, not knowing if that’s the last night you will ever get to do that. After three years of hospital stays, he finally was strong enough to get the g-tube to hopefully cut down on all the pneumonia from aspirating so badly. Tanner still doesn’t have speech at this time and he can not walk. He has had several placements of ear tubes and is legally deaf, so we got hearing aides and glasses for far farsightedness, but Tanner is so stubborn he won’t wear either. And we learned Tanner has a heart murmur and scoliosis, and soon he was diagnosed as having autism.

Tanner doesn’t sleep a lot and hasn’t since birth. He is now eight years old and just had hip surgery a year ago to put a plate in for hip dysplasia. He is still not walking but can bear weight if we hold on to him. He still des not have speech– even though we have been through six years of therapy. But he is the king of the house.

He bites himself and screams when he doesn’t get his little way. He is very small for being almost nine years old now, and he looks more like a four year old– but we are finally at a point where we stay maybe once a year in the hospital. He got a MRSA this year, so we have battled that more than anything. He has been terribly ill from that. But he is a happy guy the rest of the time sucking his thumb and being held and cuddled– he loves to be held and cuddled!

2 thoughts on “Parents Find Tanner is Missing His 9th Chromosome and Continue to Search for Solutions”

  1. Tiffany Bryant says:

    I am Tanners mother and i should of specified his deletion is a 9q34.3 how i typed it seemed like i meant he was missing the whole 9th and thats not the case just a small bottom piece

  2. Sandra says:

    Has he had whole exome sequencing? He has many of the same issues as children with a ADNP mutation / ADNP Syndrome

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