Living With Sickle Cell Disease And Surviving

WHAT I HAVE BEEN UP TO HMMM WHERE DO I START

2010-05-04T19:49:00.000-07:00

I'm Back!!!

2010-05-04T19:44:00.000-07:00

Hello All,

I have been missing in action and would like to say HEY! here are some up to date photos of MEEEEE!!!

Geetings

2009-07-21T20:46:00.000-07:00

I want to apologize for not having any current updates,Amiya has been hospitalized.She is now feeling much better and has keft to go to Camp. I can reassure you I will update as soon as she comes home with new PICS.....see ya and GOD BLESS

The BIRTHDAY BASH

2009-06-29T19:23:00.001-07:00

COUNT DOWN

2009-06-04T21:57:00.000-07:00

It is now getting time for Amiyas Birthday and she is sooooooo EXCITED so as of today she has a total of 14 days left....

lets count down ..

2009-05-27T17:10:00.001-07:00

The Storm

2009-05-27T06:22:00.001-07:00

A friend sent this to me so I deceided to share this with you..Never give up
> One day a young lady was driving along with her father. They came > upon a storm. The young lady asked her father what should she do, > he said "keep driving". Cars began to pull over to the side, the > storm was getting worse. What should I do the young lady asked, > "keep driving" her father replied. On up a few feet she noticed > eighteen wheelers was pulling over also. She told her dad, I must > pull over I can barely see ahead. It is terrible out here everyone > is pulling over. Her father told her not to give up just keep > driving. Now the storm was terrible but> she never stopped driving and soon she could see a little clearer. > After a couple of miles she was on dry land and the sun was out. > Her father said now pull over and get out. She said "but why > now?" He said "get out look back, at all the people that gave up > and is still in the storm". You never gave up and now your storm > is over.>> I thought this was a testimony for anyone of you that is going > through something. Just because everyone else, even the ones that > appear to> be the largest and strongest gives up. You don't have to, because > if you keep going, on up ahead your storm will soon be over and the > sun will shine upon your face again.>> I hope this touched someone because it did me. Pass it on to > someone who you know is going through or all of your online > friends. Tell them to never give up, because GOD will never give > up on them.>
>THE FATHER: GOD
>THE SUN: THE SON JESUS THE CHRIST

FUN DAY 2009

2009-05-26T20:37:00.000-07:00

I'm back.... here are photos from Fun Day at Amiya's School.They had a variety of activities.The Kids had a blast.
The teachers even had fun dancing and participating in the games.

This is Mya and here two best friends.
Collectively they won 1st prize for almost all the challenges.This is a pic of her classmates and ERIN, my nephew, In the middle.

2009-05-26T20:17:00.001-07:00

Memorial Day

2009-05-26T19:06:00.000-07:00

Well, Amiya has been doing Great!! We have been Crisis free for about a week now and I am so happy she has been able to enjoy her HOLIDAY... HERE ARE A COUPLE OF PHOTOS

Thank you

2009-05-13T12:03:00.000-07:00

I want to thank you all for the emails and the overwhelming responses to this site I will be posting the emails and response soon....until then stay blessed....please continue to spread the word about this site and I can reassure you I will keep you posted on new ideas, funraisers, and important information in your area......THANKS FOR ALL YOUR SUPPORT...

More Photos

2009-05-10T18:26:00.000-07:00

I want to apologize for the delay on updating the website due to school and other personal events.There were many companies that sponsored this event and a Lot of participants..So here are more photos of the walk.....

The Main Event

2009-05-02T18:08:00.000-07:00

The Sickle Cell walk was great.It was a little wet but we all had fun.There was a nice turn out of supporters and Mya made it to the finish line.It was a blast!This the first year for us but there will be plenty of more to come.Here are a few photos..............................

There is Hope

2009-04-30T13:33:00.000-07:00

Good afternoon,
I wanted to share some information with you from an email that I received.

"Hi,
I want to let you know that I admire what you are doing on this site for your daughter.I have a 3 year old son that has been on "veetids since birth",and I wanted to know will he ever be taken off? Or will the doctor put him on more medicine when he gets older?"

Just Curious"

Well, from my experience with my daughter, she was taken off the medicine about 8 months ago.We have experienced a lot of crisis that are managed by either intravenous meds or by mouth.This is a very effective but it's only temporary.She is now being prescribed hydroxeurea, this should cut her crisis down to half.I was very skeptical about this medicine, however after researching it, I feel that this is something that will help her.This is optional, the doctor did advise of the side effects, which are limited.I feel that this is a huge step in finding the cure because if this medicaine can minimize the crisis a child has it could possibly evole into a possible cure.Please talk with your hematologist for more options .

Sickle Cell Walk On May 2,2009

2009-04-27T12:00:00.000-07:00

It's that Time of the year to walk for Sickle cell disease.The date is going to be May 2, at Kelly Ingram Park from 8am until 12pm.The registration is 15.00 dollars for childeren and $25.00 dollars for adults.There will be plenty of live entertainment,Food, Fun and MORE!!!!!!!!! for more details call
Sickle Cell Foundation @ 780-2355.

SEE you There!!!!!!!!!!!

Meet Me

2009-04-24T21:08:00.001-07:00

Hi, my name is Amiya and I am seven years old. I love to go to school and play on my lap top.I have sickle cell and it is something that makes me sick at times.I love to ride my bike and one day I will be the first female quaterback.My uncle tells me to stick to being a ballerina but I loooove to play.My mom says that GOD made me this way because I am going to be his special little helper.If you would like to get to know me better leave me a message.Gotta go it is past my bedtime See ya

It was Hard But We did it

2009-04-24T09:03:00.001-07:00

On April, 16 Amiya had a blood transfusion that was successful.She is doing much better and it has been a full week without any pain Crisis.."THANK YOU JESUS"! If you didn't know most kids with Sickle cell have transfusions often to replace/support their current blood cells that they have.
I have learned so much from her.She has taught me that where there is a will God will always make away.Each obstacle that she is faced she always smile and say"Mom it is going to be OK", It brings tears to my eyes each time.I encourage you to cherish every moment with the your loved one's.
I have a couple of pics

What Is Sickle Cell disease????????????

2009-04-10T12:27:00.000-07:00

Sickle cell anemia (sickle cell disease) is a disorder of the blood caused by an inherited abnormal hemoglobin (an oxygen-carrying protein within the red blood cells). The abnormal hemoglobin causes distorted (sickled) red blood cells. The sickled red blood cells are fragile and prone to rupture. When the number of red blood cells decreases from rupture (hemolysis), anemia is the result. This condition is referred to as sickle cell anemia. The irregular sickled cells can also block blood vessels causing tissue and organ damage and pain.
Sickle cell anemia is one of the most common inherited blood anemias. The disease primarily affects Africans and African Americans. It is estimated that in the United States, some 50,000 African Americans are afflicted with the most severe form of sickle cell anemia. Overall, current estimates are that one in 1,875 U.S. African American is affected with sickle cell anemia.

A New Beginning

2009-04-10T11:23:00.000-07:00

Let's start off with the purpose of the site and that's to educate and enlightened people on Sickle Cell Disease.On this site you will meet my angel,Amiya, whom has been struggling with this disease since birth along with others whom has a continous struggle from day to day.

I will have updates of her condition along with information on different resources in your area.

http://www.sicklecelldisease.org/index.phtml

http://sicklecellbham.org/