Girl Does Not Age

[SeriouslySearching]

Did they put her through genetic testing? Why didn't they start her on growth hormone therapy used for Russell Silver's Syndrome? I have so many, many questions.

 

[Mr. E]

I'm thankful when kids like Brooke, kids with special needs, end up with parents like 6Angels and the Goldbergs. Physically, emotionally, and spiritually it would be so difficult to care for a child like that, yet these parents seem not just caring, but loving and grateful for their child.

I watched the 20/20 show and was heartened to see the sisters so helpful and supportive. The 12 year old pushing her little older sister on the ottoman through the house was adorable and sweet.

 

[SewingDeb]

Did they put her through genetic testing? Why didn't they start her on growth hormone therapy used for Russell Silver's Syndrome? I have so many, many questions.

This article says growth hormones didn't work:

Science Journal: Medical mystery - After 16 years, girl hasn't aged; scientists baffled

Doctors recommended growth hormone therapy early in Brooke's life, but the treatment produced no results."

http://www.jacksonville.com/interac...edical_mystery_-_after_16_years_girl_hasnt_ag

 

[SeriouslySearching]

Thanks, Deb~ It is so similar to Russell Silvers. I wish they could bring her here where we have a world reknown specialist for that particular syndrome. We have someone in our family with RSS and she has done wonderful with the care plus the growth therapy.

I noticed several similarities in her appearance and while it may not be totally related...it does appear to have some of the characteristics of RSS. Our loved one was misdiagnosed until she was well over a year old by other specialists.

 

[HesterMofet]

It might actually be easier for her parents to take care of her as everyone ages than it would be if she was of the same mental capacity and grew. I've seen so many kid with severe developmental disabilities and when they get to be so big, like 6' and 180 lbs., they become too much for their elderly parents to care for and end up in a group home or elsewhere. With her being so small, they may not have any of those issues.

 

[SeriouslySearching]

Sad, but you do make a good point. It is just hard to imagine why her brain is also stunted at the same age as her body and to wonder if other things could have furthered her mental growth.

 

[Salem]

I wonder if they tried to teach her sign language? You can teach babies sign language fairly easily and they learn it before they learn to articulate. I also wonder if they do walking exercises, etc. Some babies walk at 10 months so it is possible she could learn to walk.

I'm sure they have done all these things. I really doubt they have not asked every question and tried every suggestion after 16 years. She is a cutie.

Prayers for this family,

Salem

 

[SewingDeb]

You're welcome SS. Which country do they live in? Maybe they could bring her here and let specialists examine her.

 

[SeriouslySearching]

I wonder if they tried to teach her sign language? You can teach babies sign language fairly easily and they learn it before they learn to articulate. I also wonder if they do walking exercises, etc. Some babies walk at 10 months so it is possible she could learn to walk.

I'm sure they have done all these things. I really doubt they have not asked every question and tried every suggestion after 16 years. She is a cutie.

Prayers for this family,

Salem

I would hope they would develop sign language with her. It could be such a blessing for them. Children at a very young developmental age are able to learn.

It makes me wonder how much they went through with this child. What did they do that we have not tried with other developmentally challenged children? I have to believe they did everything.

 

[January.]

SeriouslySearching bless your little family member with RSS. My son had severe IUGR starting in the early 2nd trimester of my pregnancy, and early on we thought he could have RSS. But because he doesn't really have the physical features other than being very small, they ruled it out pretty quickly. I still wonder sometimes though.

 

[SeriouslySearching]

SeriouslySearching bless your little family member with RSS. My son had severe IUGR starting in the early 2nd trimester of my pregnancy, and early on we thought he could have RSS. But because he doesn't really have the physical features other than being very small, they ruled it out pretty quickly. I still wonder sometimes though.

That was her first diagnosis, too. When she was born the Neonatologist misdiagnosed her as having hydro-prosencephaly. I fought that diagnosis for over a year because there was no way she was mentally retarded and the other things the Doc claimed. They also said she would not live past 2.

Today, she is a remarkable young woman who tops out at near 5 feet and is at the top of her class scholastically. (She also played on the boys' baseball team for 4 years! LOL) She is petite and such a marvel. Boy, were they ever wrong about her!!

 

[MissJames]

It's hard. My son is 10 and the size of a small 5 or 6 year old he is blind in both eyes has CP and autisim. Emoctionally he is a Toddler and he gets tired easy and we carry him often when we are out and about. People thinking we are carrying a small child when in a couple years he will be a teenager. When he eats we have to feed him ( unless finger food) and he can only drink if drinking from a straw.Although our story is no where near the same as this families I can kinda understand how they feel EXCEPT my son can now walk , talk and answer questions and he loves to sing! He can't answer what happened when he gets hurt however he can hear a song ONE time and sing it all the way and remember it for years to come.

My prayers go out to this family . She is beautiful and I am postive she is their pride and joy.

You could be describing my youngest son. Mine has the terrible two's going on right now and I'm hoping we can at least get past that phase.My fear is that this is as far as he can develop due to brain damage.
I remember reading about Brooke several years ago.She has a great family and seems happy.

 

[January.]

That was her first diagnosis, too. When she was born the Neonatologist misdiagnosed her as having hydro-prosencephaly. I fought that diagnosis for over a year because there was no way she was mentally retarded and the other things the Doc claimed. They also said she would not live past 2.

Today, she is a remarkable young woman who tops out at near 5 feet and is at the top of her class scholastically. (She also played on the boys' baseball team for 4 years! LOL) She is petite and such a marvel. Boy, were they ever wrong about her!!

Bless her heart! My son was not expected to survive past my 26th week of pregnancy, but he's now almost 4 years old and is just an incredible, loving, happy, affectionate, and intelligent boy. He has struggled with some delays, but we are so blessed that he is healthy and here with us. Just more proof that doctors can be wrong!

 

[Mr. E]

I've finally gotten a chance to watch the TLC special on Brook (actually, I'm watching it right now). It's called Child Frozen in Time. It's fascinating, but mostly I'm really impressed with the family. They are so supportive and seem like a really neat bunch of people. The sisters clearly love their sister and care about her. The parents and grandparents seem just exemplary. I couldn't be more impressed. Right now they're showing Brooke in a special school. The program has shown that she's not a baby...she's a teen in a very small body, and she has a lot of special needs, but she's not a baby. The mom at one point says, "When people ask me how old she is, I say 16 and let them figure it out."

I encourage anyone who can to watch Child Frozen in Time on TLC. Excellent program.

 

[anthrobones]

The article does not work. It said Page unavailable.

 

[txsvicki]

I also finally got to watch part of Frozen In Time last night but got interrupted by a phone call. One of the last things I saw was Brooke at her school. It was her day to take things to the office in her little walker. On the return, she went directly down the hall to her classroom on her own. Did they ever say what age mental capacity that Brooke has or do they even know for sure? I know that previously her teacher said that she is not really sure what Brooke knows and doesn't know.

 

[Mr. E]

I also finally got to watch part of Frozen In Time last night but got interrupted by a phone call. One of the last things I saw was Brooke at her school. It was her day to take things to the office in her little walker. On the return, she went directly down the hall to her classroom on her own. Did they ever say what age mental capacity that Brooke has or do they even know for sure? I know that previously her teacher said that she is not really sure what Brooke knows and doesn't know.

I don't recall them saying, although I have it recorded on my DVR and intend on watching it again with my teens. However, the teacher was shown asking Brooke questions, and Brooke appeared to understand and answer by pointing. Also, it showed artwork done by Brooke that might be what you'd expect from a preschooler or kindergartener.

I really liked how they addressed what would happen when the parents could no longer care for Brooke, for instance if she outlives them. The parents said they've talked to the sisters (at least the two older girls), who have agreed that they would care for Brooke. The family seems very supportive and loving, as well as determined that Brooke not be institutionalized.