Happy New Year to all of our friends and family that read our updates!  Thank you.

I hope your holidays were nice.  We enjoyed 10 days in Seagrove for Christmas and New Year’s.  I think we were all ready to get back to life in the New Year!

Carter is doing really well in school – he is learning to read more and more each day. We are proud!  His passion right now is anything involving the Ninja Turtles.  This was our first Christmas since he was 18 months old that didn’t involve anything Thomas the Train.  He’s about to start T-ball in February.  He is really excited and tries on his batting glove every day!

Bernard is gearing up for the session to start, so it will be a busy few months for him.  He loved watching the Sugar Bowl and is thrilled with how the Georgia Bulldogs ended their football season! 

I’ve gone back to work- 2 days a week.  I’ve been a stay at home mom for 5 ½ years, so it has been an adjustment, but I’m loving it!  It is so nice to have adult interaction and receive a pay check.  I’m really enjoying the work.

We continue to stay involved with the UMDF – we love helping other families and just staying involved with this absolutely amazing group of people.  I’ve made so many new wonderful friends, and I know our friendships will truly last a lifetime.  I’m also still attending FOCUS (Families of Children Under Stress – www.focus-ga.org) bereavement groups when I can.  We have been doing really well- everyone told us the 1 year mark would be hard, but that we would start to feel more human again.  I would say that is definitely true.  While we continue to think about and miss our sweet Morgan daily, we can talk about her and share her life with others, and it seems to be more peaceful when we do.  She is forever in our hearts.

Bernard and I are hosting MITO MADNESS, a UMDF fundraiser, with another couple: Chris & Mary Swinn in Atlanta on March 8, 2008!  We are so excited about this evening of fun for a worthy cause!  If you would like more information:  www.umdf.org/mitomadness - give your internet a little time (20 seconds or so) to pull it up.  If any of you have a business and would like to donate to the silent auction- we would be honored.  Please email me by going to the CONTACT section on this site and the email will come directly to me. 

Wishing you and your family a blessed 2008.  Thank you for continuing to check on our family.

With love,

Leslie

I would say the Mito weekend in Atlanta was a great success!

Friday night was Music for Megan in Alpharetta- we loved it! Many thanks to so many families whom we have known for years that came out to support the UMDF (www.umdf.org) and attend Music for Megan- all because of the special impact Morgan had on these families! What a humbling night.

The Foundation of Molecular Medicine (www.foundmm.org) fundraiser: “It Only Takes a Spark” on Saturday night was a blast! We had about 140 people present and sold 100 auction items- both live and silent. The event raised over $70,000 – I’m thrilled with our results! Amazing for our first year!

Today was the UMDF golf tournament! It was sold out several weeks ago- many thanks to all of the players and companies who sponsored the event. Bernard played today and said it was awesome- perfect weather! I was unable to volunteer like I planned b/c Carter has the croup again- but he is on the mend.

Many thanks to my family and friends who supported us and our efforts over the weekend! THANK YOU!

This is from my Saturday night "speech" and introduction of one of the geneticists:

 I’m Leslie Reynolds and I want to thank everyone for coming tonight.  We appreciate your support – by being here with us- you are truly making a difference that will impact so many lives in the years to come.

I know many of you know my story, but for those of you that don’t, I want to share some with you now.

On May 12, 2004, our daughter Morgan was born.  Morgan had a very rough start from the beginning.  She was 7 weeks premature and was sent straight to the NICU, where she spent 5 weeks before coming home.  As moms always seem to know, I just knew something wasn’t right.  We learned Morgan suffered from severe seizures and drugs didn’t seem to help.  When Morgan was just two months old, she was admitted to the ICU at Children’s Healthcare of Atlanta.  She would not stop seizing and was placed in a drug induced coma to stop those seizures and allow her brain to rest.  It was an excruciating time as we watched our newborn daughter hooked up to machines, and we had no clue if she would live.  We were told a geneticist was called in for a consult, and we then met Dr. Fran Kendall – Dr. Kendall ordered numerous tests on Morgan.  The genetic tests required multiple spinal taps and blood draws.

For months, tests would come back normal, and again we still had no answers.  Morgan continued to be in and out of the hospital with brain surgeries.  Her brain atrophied due to the severity of the seizures and much of her skull had filled with fluid.  At 6 months old, Morgan had a shunt placed in her head, and when Morgan was just about 11 months old, Dr. Kendall suggested a muscle biopsy to test for Mitochondrial Disease- AKA MITO.  We had never heard of it and the thought of cutting a piece of muscle from my daughter’s thigh scared me.  We did our research and finally made our decision when she was 20 months old to move forward.

Morgan had surgery for a feeding tube and at the same time, they took the muscle biopsy.  In May of 2006- right before Morgan’s 2^nd birthday, we learned the biopsy was positive for Mito.  We were devastated and I will never forget that day as Dr. Kendall told us the results and tears streamed down my face- all I could think “my daughter has a disease and there are no treatments, no cures and this will likely kill her.”  Morgan started several supplements like Coenzyme Q10 and carnitine but truthfully, they didn’t help.

At two years old, Morgan was still having 100 or more seizures a day, and then her GI system was becoming more and more affected.  We were in and out of the hospital 6 different times in 3 months, and our final stay was last December when Morgan was sent home on hospice care.  She passed away at 2 ½ years old on December 16^th.  Parents are not supposed to plan their child’s memorial service.

My husband Bernard and I knew our life would never be the same- a piece of us died when Morgan died.  It is our sincere hope for all families affected by diseases such as Mito- to NOT endure what we have.  We are committed to volunteering to help raise funding for awareness and clinical research.  We know Morgan’s life was not in vain- but rather it was a short life with great purpose and ignited a spark in us to fight this disease.

Your support of the Foundation of Molecular Medicine enables this spark to spread and help all of the victims of this debilitating disease.

I would like to thank all of the parents here tonight.  Many of you have made great sacrifices to be here – whether it was finding a nurse to care for your child or you recently lost your child to Mito – I applaud you for being so brave and coming to join us tonight and continue this fight.  I also want to thank the many volunteers working tonight- Darin Seldes is playing in the band and his son Ty is affected by Mito.  Chris Swinn is going to be our live auctioneer and his daughter Emily is affected, too.  I thank you ALL from the bottom of my heart.

I want to thank Drs. Fran Kendall and John Shoffner for forming this Foundation.  It has been an honor to work with two brilliant doctors over the last year in planning this event.  Their commitment to my daughter Morgan and children from all over the country is beyond impressive.   

I would now like to introduce Dr. Fran Kendall and give you a bit of her background.  Dr. Kendall trained and was on staff at Boston Children's Hospital and Harvard Medical School for a number of years.  She now directs the Horizon Molecular Medicine Metabolic Laboratory and has extensive experience in the diagnosis and management of children with a wide array of inborn errors of metabolism. Dr. Kendall is board certified in Pediatrics and in Biochemical Genetics. She has authored numerous research articles on various rare diseases that include mitochondrial disease and has a long term interest in research and clinical aspects of rare metabolic diseases.

Please welcome Dr. Kendall.

Hi- I'm sorry- I was having website problems.  If you have selected "contact" off of the site and emailed me- I did not receive it.  I had issues with my website server's email address being too full.  It is now corrected.  I love to write back, so please forgive me if you emailed and think I didn't respond!

Many thanks,

Leslie

07 LC 35 0528

House Resolution 624

By: Representative Golick of the 34^th

A RESOLUTION

Honoring and remembering the life of Morgan Elizabeth Reynolds; and for other purposes.

WHEREAS, Morgan Elizabeth Reynolds was born on May 12, 2004, to her loving parents, Bernard and Leslie Reynolds; and

WHEREAS, she arrived in this world seven weeks earlier than expected, and upon her arrival, she faced many serious health concerns; and

WHEREAS, despite the odds, she struggled through many seizures, surgeries, and medical procedures, always giving her parents the simple and enduring joy that only a young child can give; and

WHEREAS, her parents stood by her, holding onto her in quiet vigilance; she had their continued prayers, their constant touch, and their complete devotion through all she had to endure; and

WHEREAS, Morgan´s body could not continue its battle for life, and she passed away on December 16, 2006, at the very young age of two years and seven months; and

WHEREAS, while little Morgan has left us, she will always remain in the hearts of those who knew her, remembered for her smiles, her beauty, her bravery, and most of all, the tremendous love she gave during her short stay on Earth; and

WHEREAS, Morgan Elizabeth Reynolds touched the lives of so many during her life, and now she suffers no more; God has taken His precious gift so that she shall have peace without pain; and

WHEREAS, in this time of sadness, we mingle our sympathies with the grief of her family and friends.NOW, THEREFORE, BE IT RESOLVED BY THE HOUSE OF REPRESENTATIVES that the members of this body express their deepest regret at the passing of Morgan Elizabeth Reynolds, honor the amazing love and beauty she brought to this world, and extend their most sincere condolences to her family.

BE IT FURTHER RESOLVED that the Clerk of the House of Representatives is authorized and directed to transmit an appropriate copy of this resolution to the family of Morgan Elizabeth Reynolds.

  I am reading a book by Zig Ziglar: Confessions of a Grieving Christian.  Zig’s daughter died in 1995 at the age of 46.  Though our situations are very different, our grief is very similar.  He says the mix of emotions is “strange and extreme” – “mixed with sorrow, love and joy.”  I agree.

Many people have said to us “it is for the better.”  Well, yes, it is wonderful Morgan is in heaven, she is healed, she is whole - but those are painful words for me to hear.  It is beyond excruciating to lose a child- no matter how sick she was or wasn’t on earth.  The bottom line is, my baby girl isn’t with me here, and I can no longer hold, kiss or hug her, and it deeply hurts.  I have a hole in my heart.

Carter is an unbelievable child.  I’m so thankful for him and his loving heart and innocence.  We openly talk each day about Morgan – how much we miss her and love her.  Each night when we say his bedtime prayers, he says “Thank you for sending Jesus so Morgan can be in heaven with him.”  Those words bring tears to my eyes and a smile to my face. He has asked us some wonderful questions- sometimes we have answers and other times we don’t.

We plan to continue to keep Morgan's website active.  Maybe our story can help another family who is in a similar situation or maybe you want to come by and see Morgan’s beautiful pictures.  I know I will.

Thank you for praying for us as we grieve each day and never forgetting Morgan Elizabeth and all she did in her short life on earth.

Morgan's service was absolutely beautiful. I know so many of you wanted to be there and couldn't make it. I wanted to share this with each of you.

Montage of Morgan and a Celebration of her:

http://www.onetruemedia.com/shared?p=ce2c442f1eff2dfefbb1e&skin_id=0&utm_source=otm&utm_medium=text_url

Printed in the program:

"Neither this man nor his parents sinned," said Jesus, "but this happened so that the works of God might be displayed in him."

John 9:3

This Bible verse brought us the greatest comfort during our journey with Morgan. In the beginning, we struggled with many questions:

“What did we do to deserve this?”

“Why?”

“Is there really a God?”

“How can God allow this?”

“When will Morgan get a miracle?”

These are just a few of the questions we have asked ourselves. Not only has this been a physical and an emotional journey, but it has been a purpose-filled one as well.

When Morgan Elizabeth was born on May 12, 2004, our lives changed forever. Without our Christian faith, we know we would not be here today. We are humbled to have experienced God’s Grace and truly felt Him hold us up when it felt like the ground was crumbling beneath us.

We are broken hearted and full of sorrow as we say good-bye to Morgan. She blessed us in so many ways and taught us the meaning of unconditional love. We love her and will miss her every moment of the rest of our lives. We know she is in heaven, free of pain and doing all the things she was never able to do on earth: walk, see, run, dance, laugh, talk, skip and giggle.

We would like to thank all of you for your outpouring of love, prayers and support. Our family, church family, UMDF family, friends, and Morgan’s care professionals have been amazing.

Thank you to Morgan’s nurse Maria. What a blessing you are to us, and we know God sent you specifically to our family to help care for Morgan in her final months.

Thank you to all of her therapists who continually worked with Morgan. You have been a part of our lives since she was just 6 months old. We will always cherish the smiles you brought Morgan and our family.

To the nurses and staff at Northside and Scottish Rite- Thank you. We always knew Morgan was in great hands. We can never repay you for the outstanding care you gave her and our entire family.

Thank you to the incredible physicians and staff who never gave up hope for Morgan. You encouraged us and gave her the best life possible. Each of you has made a special impact on our family. You are truly called to your profession, and we respect you in more ways than you will ever know.

Morgan, a piece of us is with you in heaven. We miss your gorgeous blue eyes, porcelain skin, silky hair and kissable cheeks. You are forever in our hearts, and we will always treasure our memories with you.

We love you,

Mommy, Daddy & Carter