On February 29^th, the world celebrated Rare Disease Day. The goal was to get 7,000 members to join their Facebook group by this date. We live in a world with so much technology. We live in a world with so many cures. We also live in a world that has so many diseases that are going unnoticed. There is over 7, 000 rare disease that have no cure. They are given zero attention. A lot of these diseases do not have a name. I remember when Hayden got diagnosed. I was so frustrated. How can we be diagnosed with a disease that has no cure? ASLD does not even have a doctor that studies it in the world. I never thought that I would wish CANCER on my child, but in this case I would have. ATLEAST you can fight for your health. ATLEAST you can go to any hospital in the world and find a doctor that specializes in cancer or cardiology. As Brent and I listened to the radiothon, I cried a lot. I was thankful that Hayden didn’t have to undergo all of the surgeries that so many of these children were going through. I was also angry. I was also frustrated. I was extremely mad. These cancer stories and heart stories were so awesome. These children were given hope and able to receive a miracle. They were able to play sports again. Then my story would play, we have nothing to say other than live life to its fullest. Hayden is given no cure, no hopes for improvements, no specialist all because of the word RARE. Rare disease day is our only step of hope. We are not blessed with the ability to have surgeries or treatments to help us receive our miracle. I must say THANK YOU TO AN AWESOME COMMUNITY. Rare disease day was definitely in full force in the Mississippi Delta. I was truly overwhelmed by the amount of pictures that were placed on my Facebook wall in honor of Hayden. Schools were wearing jeans. Teachers were wearing jeans. Business offices were wearing jeans. Babies that were Hayden’s age were wearing jeans. Many people went over and beyond. Not only did they get to wear jeans, they were also told why they were wearing them. They were raising awareness for all of the rare diseases that are going unnoticed. They were making signs of encouragement for Hayden. They were giving us hope. We hope and pray that rare disease day gets larger and larger each year. We hope that one day a child will not have to suffer without fighting. It is a terrible feeling to sit back and do NOTHING. We were told that our child is terminal. We have NOTHING to do to help improve our situation. Now do you understand why I said I would have wished cancer on him? Please do not get me wrong, I would have been devastated in hearing that our child had cancer or a heart issue also. The point being is I wish we could undergo a surgery, a treatment, or see a specialist doctor. All of these things would make me feel like I did all that I possibly could have to help Hayden.  At least then we could have had hope and a chance. As Brent and I listened to true miracle stories of cancer and cardiology, we looked at each other and said How lucky those parents and children are! Rare disease day was amazing all over the USA. The Global Genes project and funds is even putting together a book to send to congress and the President. I have HOPE that all of those “I have hope in my Genes” photos will touch many lives. I have HOPE that we will continue to raise awareness for these rare diseases. One day at a time, I hope each of the 7,000 diseases receive awareness. I hope that each of these receive a cure. I hope that each of these receive research in the future. I can say one thing for sure; THE MISSISSIPPI DELTA has hope for raising awareness. Each person that participated in raising awareness for rare diseases has a special spot in our family’s heart. I was overwhelmed by the abundance of love that our community showed.  I would be willing to bet that we were participating more than most people in the UNITED STATES. Below is some of the MANY photos that gave our family Hope!

  Even dogs support Hayden!

 Anna in Kentucky supports Hayden and Rare!

 Arkansas families support Hayden!

 Jackson families support Hayden!

 Close friends support Hayden!

 Memphis supports Hayden!

 Children wear Jeans for Genes!

 More children support Hayden, from Arkansas!

 Belzoni, Ms supports Hayden!

 Starkville, Ms Supports Hayden!

 Rolling Fork and SIA support Hayden!

 Colorodo supports Hayden!

 Suzi Paige supports Hayden! They also sent proceeds from people who bought jeans to Blair Batson in Hayden's honor! Thank you!

 Cleveland, MS supports Hayden!

 Alabama supports Hayden!

 MSU supports Hayden!

 Mitzi supports Hayden!

 Mc Supports Hayden!

 Cousins support Hayden!

 Sunflower County Libraries support Hayden!

 Arkansas supports Hayden!

Double support for Hayden, Jeans, Batson car tag, and a little bit of Love!

 ChiChi loves his jeans everyday but wore them for his BAYBEE today.

 Armstrong Elementary supports Hayden!

 A Rare Gene day program for Hayden at my old school. Armstrong Elementary supports Hayden!

 Lilo's date with close friends to show Hayden love and kick off his birthday celebration.

Oh mommy, no pictures please!

 Baylor in Tenn. supports Hayden

 Alabama and high school friends support Hayden.

Brown's Pharmacy Supports Hayden! (These girls and David are amazing) They make my life so much easier. They are the reason giving Hayden medication is not stressful. Anyone that needs a pharmacist family that cares should try Brown's Pharmacy. Thank you girls!

 Spoiled Rotten supports Hayden and gives you ten dollars off your purchase for supporting him!

Indianola supports Batson.

 Great friends support Hayden.

 Mommy and Daddy support Hayden!

 Nana and Papa support Hayden and buy him beach clothes:)

 Louisiana ( I believe) pipeline supports Hayden!

 Hayden's Great Grandparents support Hayden.

These are just a FEW of many photos that were sent to our family on Rare Disease Day. I had a lot of pictures sent to my cellphone throughout the day. Seven states are shown above participating in Rare Gene Day in Honor of our Child. 2 local clothing stores are shown giving incentives in honor of our child. Children Hayden's age are wearing jeans in honor of our child. Schools are having programs in honor of our child. People are making encouraging posters in honor of our child. All of these things give us HOPE, COURAGE, and STRength. I am often asked how are you so strong? With a community and friends like each of you, I have nothing but HOPE! We are encouraged by cards and messages daily. We are completely BLESSED with the best community to love Hayden. Thank you so much to everyone who supported Rare Disease Day in Honor of Hayden.

A SPRING LIKE WEEKEND.....

Hayden had a busy fun filled spring like weekend! Thursday night, he went to see his “cousins.” Their mommy was out of town. They wanted to have their Uncle B and their “Uncle Mrs. Lauren” come visit. Of course, I had to go make sure they were okay. Daddy couldn’t paint their finger nails so I did. I loved having a little girl time with my favorite girls. Hayden loved seeing his friends too!

 I LOVE PAMPERING MY LITTLE FRIENDS! THEY LOVE HAYDEN SO MUCH!

HAYDEN IS LEARNING HOW TO USE AN IPAD AT AN EARLY AGE! SHE IS TAKING EXTRA GOOD CARE OF HIM!

Friday morning, he asked me if he could go to work with me. I have an amazing boss (my daddy)! Since, we are not too busy this time of year, he said bring him on! We had such a good day in Lake Village. He did sleep most of the day. He was so excited because he got to go see his Uncle Todd and Aunt Lauren that night. We had a great dinner from Lillo’s. As we were heading home from dinner, I realized we had only had four seizures all day! What a great feeling! We had just a touch of heaven on Earth! Thank you Lord for such an amazing day!

A HARD DAY AT WORK!

Saturday, we had a fun day planned! He had to go to his friend Reed’s birthday party. He was so excited to see his friend Reed and his cousin Chi-Chi. He sat in the chair as the kids played. He loved watching all of them. Hayden reminds me to not be sad that he cannot play with the other children. He just wants me to dress him in style. We got dressed in his cute birthday long all. He was so excited to help Reed celebrate. He was even more excited about what Reed had chosen to do. Reed and his family decided to donate crayons and coloring books to Blair Batson. They had such a great turnout. Hayden knows that all of his Batson friends will have a fun week coloring pretty pictures for their family. Look out Batson, even a two year old is making a difference in the hospital! Thank you Reed for donating crayons and coloring books to the wonderful children in the hospital! As you can tell, all the children were thrilled to be a part of this awesome donation! What a perfect day for a birthday! Hayden was so relaxed that he went the whole birthday party without any seizures! Praise God for another touch of heaven on Earth. Hayden was pretty sad to leave his friends at the party…. He started seizing a lot once we left the party. He had a pretty large amount of seizures Saturday afternoon. As I have always said, we live a rollercoaster type of life. He was perfect though! He even convinced his NONA into buying him two pairs of shoes!

 HE WAS SO GLAD TO SEE HIS AUNT EMMA AND AUNT MEG! WHAT A FUN BIRTHDAY PARTY!

 OH CHI CHI--- PLEASE TELL THEM TO STOP TAKING PICTURES OF US!

 LOOK AT ALL OF THE LITTLE BATSON SUPPORTERS. THEY ARE MAKING AN IMPACT ON MANY KIDS AT AN EARLY AGE! THANK YOU REED FOR A GREAT DONATION TO HAYDEN'S FAVORITE HOSPITAL!

HAYDEN IS READY TO PARTY! HE IS SO GLAD THAT HE COULD HELP READ CELEBRATE!

HAPPY BIRTHDAY TO REED FROM HAYDEN. THANK YOU FOR MAKING A LARGE IMPACT AT AN EARLY AGE IN YOUR LIFE!

HAYDEN WAS SO EXCITED ABOUT HIS WHISTLE AND CAR PARTY FAVOR! HE WAS KIND ENOUGH TO LET HIS COUSIN CHICHI HAVE THEM!

 LOOK AT ME, I AM READY FOR SPRING WITH MY PRETTY WHITE SHOES!

Sunday morning, he woke up screaming at 3. He was seizing a lot! Man oh Man can this poor baby not catch a break! I was determined to let him enjoy the beautiful day outside. We met his Aunt Meg and Cousin Chichi at Black Bayou. We played on the Rhino, wagon, tractors, etc. The boys had a large time! Hayden was worn out when we left! He went to sleep for the night. He was still seizing throughout day. Unfortunately, he woke up screaming in pain again at 3 this morning. Please Lord allow this pain to pass. Allow this child to continue to feel peaceful. We are praying for more Heaven like days in our future. A weekend with friends and family is a weekend of NO WORRIES. A weekend of MEMORIES! This spring like weather makes us enjoy each day fully! GOD IS GOOD ALL THE TIME NO MATTER WHAT!

 OH DADDY, CAN'T YOU TELL MOMMY TO LEAVE US ALONE! I'M SICK OF ALL THESE PICTURES!

HAYDEN ENJOYED THE SPRING LIKE WEATHER. WE HAD A GREAT DAY OUTSIDE!

The following sums up our weekend:  YOUR LIFE SHOULD BE FILLED WITH LOVE. GOOD IS LOVE THOSE WHO LIVE IN LOVE LIVE IN GOD, AND GOD LIVES IN THEM. THIS IS HOW LOVE IS MADE PERFECT IN US. 1 JOHN 4:16-17A. You were born with the love of God within your heart. When you live in the love of God, you will naturally live and grow in that same model. When you emulate God’s love, those around you respond to your care and thoughtfulness. When God’s love is perfected in you, the confidence you have in Christ and your Christian walk will naturally flow to others. There is nothing more important than the love you share with others.

WORN OUT FROM LIVING LIFE TO ITS FULLEST WITH MOMMY AND DADDY THIS WEEKEND!

*** Remember to wear JEANS for GENES on the 29^th! We hope to continue to raise awareness for all of the rare genetic disorders in the world. We are raising awareness for the rare disorders that have zero research, no cure, and no treatments. We must find cures for all the suffering babies in the world!

Blair E. Batson Hospital for Children

It's RADIOTHON week--we're almost ready to go live on Wednesday at 6 a.m. We hope you'll join us by listening to your favorite Radio People station. You can go to your favorite station's web site today to donate or become a Miracle Giver ($15 a month). Help kick off this great event by giving today. Participating stations include Mix98.7, Y101.7, US96.3 and Meridian's Kiss 104.1, 97OKK, 105.7 The Beat and Q101.

*HAYDEN WILL BE ONE OF MANY STORIES THAT YOU WILL BE ABLE TO HEAR THROUGHOUT THE RADIOTHON. THANK YOU LORD FOR ALLOWING US THE OPPORTUNITY TO BE BLESSED WITH AN AMAZING HOSPITAL!

ROLLERCOASTER CONTINUES

Brent and I cannot begin to thank each person that supports Hayden. We are so loved by people all over the United States. We have some friends that are literally more like “Aunts and Uncles” to Hayden. They are the ones that check on me often, bring dinner to our home, or just send us uplifting cards. Hayden is blessed to have some of the best adopted “Aunts and Uncles” in the world! Thanks to each of you for loving and supporting Hayden like your own!

 Hayden has some little ones that support him in the children type ways! He loves his friends!

Just a few of the MANY that are loving and supporting Hayden! We love ALL of our friends and family that visit us weekly.

Thank you so much to everyone who participated in the benefit raffle for Hayden. We cannot begin to tell you how much it means to us to have so many people loving him. Another very special thanks to Kimberly’s mom for dealing with all of the account set up and deposits. We are so blessedJ  we had a great dinner and enjoyed visiting with each of you.  The lucky winner was Lisa Fratesi’s children. She wanted to give the money back to Hayden. We want to get her children something special from Hayden J Washington school also did the hearts for Hayden. I cannot wait to share a picture of them in their red shirts for Hayden day.

 Hearts for Hayden at WS!

 Ashleigh and Gary's Sunday School class showered Hayden with Cards.

 Lela supporting Hayden by wearing Red in his honor!

 Will and Meg showing off their hearts for Hayden.

Hayden would like to tell you thank you for loving and supporting him. Whether it was at Deer Creek, WS, or the people that worked hard for his raffle:) More pictures coming soon from the raffle drawing once my hotmail opens back up :(

As for Hayden, we are still riding this rough rollercoaster. I am pretty sure I am developing rings below my eyes. I feel like a walking zombie. Hayden is seizing so often in his sleep. I am sleeping so lightly so I can hold his finger, pray with him and make sure he is okay. Usually these seizures are beginning around 3 am…. That makes for a LONG day! Hayden has had some very different and scary seizures recently. He is jerking faster, closing his eyes, and holding his breath. All of these things make for a very emotional rollercoaster ride. I keep reminding myself that he is a blessing.  He is a miracle. He continues to surprise us. We are so blessed for each day with Hayden. The doctors added some more medicines yesterday. I feel like we add medicines each day. We are on 7 medicines in the am, one mid-day, and seven at night. I need a journal to keep up with them all. We recently had to use the distat (emergency drug to stop a seizure). Using the distat is always scary and devastating. I hate to “drug” Hayden to stop a seizure. As far as the fussiness, we have learned that he likes pediasure. The pediasure has helped him with belly aches. He seems to be a much happier baby. Praise God for a happy baby. Happiness makes all worries disappear.

Happy days are good days. Good days bring tears of Joy. We are so THANKFUL for good days!

My friend Holly and Mrs. Nita gave me a book. The title is Life is a Gift.  I LOVE IT ALREADY! AWESOME BOOK! I began reading it last night, I got to page 17 before I was crying and rocking Hayden to sleep. It really makes me realize that I am not alone. Many people are struggling just like we are. I read a passage that hit home to me. They were sitting in the genetics office waiting room. They looked around the room to see handicap kids, kids with tubes, and helmets. The mother looked at the Husband and said why are we here? We are not supposed to be here? Our child is supposed to be healthy? Each of these sentences made me cry because it’s exactly what I did. I still feel like God is going to wake me up from this dream. I am learning that I am supposed to be the one sitting in the genetics office. I am the one that is supposed to help support others that are hurting. God placed me on this earth to be Hayden’s mother. He placed Hayden on this Earth to make a difference. Now we must stop crying and do what God placed us on this Earth to do. I am confident that God picked the correct family. I am sure of this because of our great help! Our family is helpful and awesome. Our friends are our backbone. We could not do any of this without the uplifting comments, cards, messages etc. I have learned the importance of letting people know you care. We have had many family and friends let us know this! We appreciate it! Hayden, Brent, and I are going to continue doing what God placed us on this Earth to do. We are fixing to get busy making a difference and helping people in need. Recently, Hayden had Deer Creek, Washington School, and the benefit raffle done for him. Spoiled Rotten is doing a fashion contest in honor of Hayden where all proceeds go to Blair Batson. His friend Reed is donating crayons and coloring books to Batson for his second Birthday. The ASTRA club of Greenwood is adopting a floor of Batson in Hayden’s honor. Kappa Delta is doing books and coloring books for Batson in honor of Hayden. Mrs. Roberts, Jennifer, Lisa, and Kelli are supporting Batson car tags in honor of Hayden. Jordan James and Emily Lewis are swiping their Bank plus credit cards in honor of Hayden. All of these things are HUGE. They give us courage. They give us hope. Each of these things is making a difference in someone’s life. We hope that we can continue to help children in need.

Please go to GLOBAL GENES PROJECT AND FUND ON FACEBOOK. WE ARE TRYING TO GET ONE MILLION LIKES FOR RARE DISEASE DAY ON THE 29^TH. PLEASE WEAR JEANS FOR GENES ON THIS DAY IN HONOR OF ALL THE KIDS FIGHTING WITH A RARE DISEASE. WE MUST DO OUR BEST TO GET AWARENESS OUT THERE. WE WILL CONTINUE TO BELIEVE IN A CURE. WE WILL CONTINUE TO BELIEVE IN A MIRACLE. HAYDEN HAS HOPE IN HIS GENES J Thank you to Helen Story for getting Jeans for Genes approved for her school district. Thank you to Misty Morlino for working on getting it approved for the school in which I use to teach at. This day is highly important! Not only will it raise awareness but it will help people realize how lucky we are.

CURIOUS FOR ANSWERS!

I guess I am just a hard headed person. I’ve always had goals for my family. I’ve had goals of success, fun, trips, and dreams for my family. Watching Hayden struggle was not part of my plan. It often makes me angry to have to add this to my “plan.” I am constantly reminding myself that God developed this plan for a reason.  We must continue to go along with plan even when we do not understand why. The Lord has an incredible plan for Hayden’s life, and we are honored to be his parents. God must really trust us! I am constantly telling Hayden that God has his hands around him. What a week! Hayden went from having great days to bad again. Why does this continue to surprise me? I will never know! I guess I have gained so much hope for good days. I have not let go of trusting in my miracle. Unfortunately, this is often a letdown. One of the hardest things that Brent and I have to do is watch Hayden suffer. Today, we have added another dose of valium. We are praying that this will keep him comfortable. I am so sick of mixing medicines, but if they will make him feel better it’s worth it! I am always so quick to place a Facebook status bragging about his good days. I never inform people of the extreme of his bad days. I guess I just try to forget about the bad. Hayden is in pain. He is hurting from muscle aches and gas build up. The double dose of valium is not phasing him. I am praying that the third dose will do the trick.

The main reason that I am posting a blog today is curiosity. I research rare diseases daily. I am always hoping that I will see a post about new research or a new cure. After all, I feel so helpless watching Hayden suffer without a cure. As far as we know, we are the only living case of adenylosuccinate lysas deficiency in the United States right now. I have only found one other mother in the USA to talk to about the deficiency. Her son passed away at eleven months. She has given me a lot of advice. I also talk to my friend in Canada. She had two daughters with ASLD that both passed away this year. Tracy and Jolene have both informed me of the seizures that would last over three hours. They also prepared me for the thirty plus seizures a day. Thank you God for these two women! I am so blessed that I have them to talk too! They did prepare me for our 3.5 hour seizure on January 15. They answer all of my questions. They pray with me and for me. They help me keep my head up. I must say that I could not have done it without their preparation. I must admit that I wish I had someone to talk to that has a child living with ASLD. Unfortunately, I do not know if there is any more living in the world. As I look at the “stats” of my blog, I see that over 5,000 people have read it. I notice that a lot of different countries have read it. We have had people from Canada, United Kingdom, Australia, Mozambique, Zimbabwe, Guam, South Korea, Netherlands, Brazil, and Costa Rica few our blog. What does this make me believe? It makes me believe that somebody in these countries are dealing with ASLD too. It makes me believe that they are struggling for answers just like us. PLEASE IF ANY OF YOU ARE READING THIS BLOG, CONTACT ME! IT IS SO HARD FEELING LIKE WE ARE ALONE. I WOULD LOVE TO KNOW HOW THESE PEOPLE FOUND OUT ABOUT OUR BLOG. IF YOU HAVE A CHILD LIVING OR WHO HAS PASSED AWAY FROM ASLD, I’D LOVE TO TALK! I’D LOVE TO ANSWER QUESTIONS AND ASK YOU QUESTIONS IN RETURN. I AM DESPERATE FOR ANSWERS, DESPERATE FOR HOPE, DESPERATE TO KNOW THAT WE ARE NOT ALONE! MY EMAIL ADDRESS IS LAUREN122885@HOTMAIL.COM.... I HOPE TO HEAR FROM YOU SOON!

Be strong and courageous, and act; do not fear nor be dismayed, for the LORD God, my God, is with you."~ 1 Chronicles 28: 20