Thursday, April 8, 2010

Scarlett

Of all my nieces and nephews, Scarlett is the oldest. She is the oldest by less than a minute as she has a twin sister, but she is the oldest.

Scarlett is special. All my kiddos are special, but Scarlett just has something in her that melts you. She is very compassionate, has lot of questions, very affectionate, and very sensitive. She seems to understand things that are way over her head and she gives great hugs. She is smart and funny and is very socially aware.

Another thing that gives me and Scalett a very special connection is our dimple. We both have one dimple in the same cheek in the same place. On the day the girls were born, I remember getting a text from my dad... it just said "Scarlett has your dimple!".

As the girls have grown up (they are going to be 4 in May and I cannot handle it), Scarlett has had a hair problem. As her twin sister Juliet's hair grew long and curled, Scarlett's hair stayed short and fine. Shannon, my sister, talked to doctor's about it who suggested that she was a late bloomer and to give it time.

This is Scarlett at 3 years old in September.



On the side bar of my blog, you can see a picture of Scarlett and Juliet at 3 years old.


After seeing a pediatric endocrinologist, followed by one of the best pediatric dermatologists in the state of Texas, Shannon and Scarlett got a diagnosis. Scarlett has a rare hair disorder called Short Anagen Syndrome.

The best I can understand it is this: her hair never has the chance to grow long. Most people's hair will stay on their head for several years before it falls out. Scarlett's hair only grows a few months before it falls out. All of her hair follicles are working, they just have a short life-span.
As you can imagine, this is very hard for a very girly little girl with a twin sister. My sister Shannon is an AMAZING mother who has researched this as far as she can. Sadly, there is little information on the subject. She started a facebook group about Short Anagen Syndrome and she has met tons of mothers from around the world who are struggling with this same issue. There isn't really a solution. Some people have seen some improvement after using rogaine treatments. Scarlett has done this treatment as well and we definitely saw the hair thicken, but no significant improvement.

It appears that this can get better with puberty, but there is no guarantee. As Shannon has spoken with adults who grew up with this issue, she has learned that most of them had to start wearing wigs.

The first time Shannon introduced the idea of a wig to Scarlett, her response was "Can we go right now?". Several days later, Shannon took Scarlett to try on a special wig. She was giddy, clapping, smiling, saying "thank you" and telling her mommy that "Today is the best day!".

Needless to say, they came home that day with a wig! As the weeks have gone by, Scarlett has gotten used to her wig. She doesn't wear it every day. This is fine as most of her peers in pre-school are at the age where they don't really notice.
The first time Shannon sent me a picture of Scarlett with her new wig, my eyes welled up with tears. She just looked so happy.....



It just suits her!


We are very sure to tell her that she is pretty with or without the wig. When I saw her in March for Dean's birthday party, she came up to me and said "Do you like my hair?". She is just proud as a peacock!!


One amazing thing that has happened through all of this is that because of my sister Shannon's efforts, she has been in conversations with some pediatric dermatologists from Harvard University who have expressed interest in researching this further. Since she has already gathered several people from all over the world who share this disorder via the facebook group, the work of gathering subjects for the study has already begun!


I have been so impressed by my sister Shannon and all the work she has put in to helping her daughter. I hope that I am as good of a mom as she is.


I will keep y'all posted on any progress that is made, but I just wanted to raise awareness and let you see that smiling face that we all get to see.

I sure do love that pumpkin...

8 comments:

Lindsee said...

I love that little gem. What a treasure she is. I still can't get over that wig on her! She looks so grow up. I love it!

Shenanigans said...

Thanks, Jenny! She's a charmer with long hair or short. She loves her Aunt Jenny and her singular dimple. :)

Jaclyn said...

i love that pretty girl!

Kelli said...

Scarlett is such a precious name, for a precious little girl with a precious head of hear!

She is ROCKING the wig! Praying that she is able to have fun with the possibilities and that no one ever steals the JOY out of that smile!!

connorcolesmom said...

Jen
Scarlett is beautiful - what a sweet child
I love her little sassy pose in the pic with her new 'do :)
And way to go to your sister - she is on it :)

annalee said...

what a beautiful girl on the inside and out! it is evident in her pictures what a precious one she is. her smile is priceless!

Heather said...

She is a beauty! I love these pics. She has a beautiful smile! I need to e-mail. We have had similar cases with Emma in the past. She went through a spell for a couple of years where her hair would fall out in large clumps. Her hair has never been past her shoulders, it's gotten thicker, but never grown in length. I have a dermatologist number that I was given, she is a pediatric derm. Anyways, my dermatologist told me there could be a couple of conditions that could cause this. I just need to e-mail you! Let's talk soon!

Alyson Hubbs said...

I live in TX and have an almost 5 year old with hair that won't grow longer than about 1.5 inches except for a single patch at the crown that is a little longer. I am concerned that it might be SAS, and am looking for a pediatric dermatologist experienced with this condition. I noticed you mentioned that your niece had been to one of the best pediatric dermatologists in TX. Could you let me know the name of that doctor? Thank you so much!