6th Annual JPL Golf Tournament

By Alexis Shoemaker

On April 22, 2007 the Lee Family welcomed a beautiful little girl into this world. Handpicked and deliver no doubtingly by the hand of God himself. A miracle meant to inspire and led. The pregnancy and delivery was ideal and Jocelyn was born seemingly healthy. She was full of happiness and spread that happiness to everyone that had the honor of meeting her and being a part of her life. But a few months after birth it became apparent to her parents that Jocelyn was not developing the way a normal child was supposed to. Optimistic and based on little experience, the Lee’s were hopeful that their little girl was just moving at her own pace was not yet ready. However, at her 4 month check-up reality came crashing in on the Lee Family, and after doctors ran many test and addressed Jocelyn’s extremely low muscle tone, they concluded that Jocelyn if fact had Spinal Muscular Atrophy or SMA, a motor neuron disease. Spinal Muscular Atrophy (SMA) is a motor neuron disease. SMA occurs when there is an alternation in the SMN1 gene, in which the SMN protein that plays a critical role in the survival of nerve cells in the spinal cord is significantly reduced; the spinal cord is responsible for muscle contraction. These motor neurons affect the voluntary muscles used for activities such as crawling, walking, head and neck control, and swallowing. In other words, as the muscles do not function as they are meant too, they become smaller and weaker, thus resulting in atrophy. SMA is known as an autosomal recessive disease, meaning that those with the disease must have two copies of the altered SMNI gene.  It is a relatively common “rare disorder”: approximately 1 in 6000 babies born are affected, and about 1 in 40 people are genetic carriers. (www.fsma.org and DNA Learning Center).

Can you imagine if your child was one 1 of the 6000 babies born with this horrible disease.  Many families would have given up, crawled into bed, and let the enormous grief associated with this disease consume them. But not the Lee’s. Jocelyn is no longer with us those dear to her physically, but spiritually she has never been more present. Jocelyn was a caterpillar trapped in her cocoon, but in the end was transformed into a beautiful butterfly. There is not one person they she touched that does not carry the mark of love she left behind. Rabindranath Tagore once said, The butterfly counts not months but moments, and has time enough.  Jocelyn was here only a short time, but the legacy she accomplish was uncomparable.

The Lee family now faces the same journey with their son Nathan, but one thing they took from their brief, but wonderful time with Jocelyn is that everything happens for a reason and there is an opportunity behind every challenge to make a difference and change the lives of others; that is exactly what their children have done for them and others. No amount of pain and grief could undo the love and precious memories that have followed their birth. Therefore, the Lee’s are in the of process to setting up a foundation in Jocelyn’s honor to help other families facing SMA, but in the meantime they host yearly fundraisers that help fund and support families with SMA in need.  One annual event is held right in our back yard here in Lake Royale and is rapidly approaching and we need your support. On April 26, 2014 at 12:00pm, the Lee Family and their many supporters, family and friends will be holding the 6th Annual Jocelyn Page Lee SMA Golf Fundraiser at the River Gold and Country Club located at 170 Clear Water Road in Louisburg, NC 27549; Entry fee will be $50 per person or $200/foursome and Lunch is included with registration. Individuals and businesses can also become tournament or hole sponsors. Tournament Sponsorship is $250 and Hole sponsorship is $100. For more information and other donation options please click on the link http://www.jocelynpaigelee.org/events/golf. Please spread the word and help carry on Jocelyn’s amazing legacy.

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We Need Your Help – 5th Annual JPL Golf Tournament

We are rapidly approaching this year’s annual Jocelyn Paige Lee Golf Tournament to benefit Families of Spinal Muscular Atrophy.  This year’s tournament will be held on Saturday April 27 at noon at The River Golf & Country Club in Louisburg, NC.  We would like to formally invite each and every one of you to attend if possible, if you are unable to attend we understand and ask that you make a donation to help the cause.  As many of you know Jocelyn went home to be with our Lord on August 14, 2011, it doesn’t seem like it was that long ago that she was right here with us. We praise God that He has given us that peace and also the truth that we will be together again one day soon.

We continue the battle of beating SMA as we are now blessed with our 2nd son Nathan who was diagnosed with the same type (Type I) as Jocelyn.  We are asking that each of you look deep within your hearts and ask God what part can you play in helping with this year’s tournament.  Help us make a difference in the lives of these blessed children and their families.  ALL proceeds will go directly to Families of Spinal Muscular Atrophy (www.fsma.org).

You can either sign up to participate or make a donation by visiting the link below.


We also ask that you please pass this along to family and friends in hopes that they too will participate and/or donate.  We attached a flyer to this email to pass out or post around you areas.  Thank you in advance for your contributions and we look forward to seeing and meeting each on you April 27th!

God Bless,

Shane and Jennifer Lee

“In everything I did, I showed you that by this kind of hard work we must help the weak, remembering the words the Lord Jesus himself said: ‘It is more blessed to give than to receive.’ ”  Acts 20:35

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Birth of Nathan Kris Lee – 8-9-12

We would like to announce the birth of Jocelyn’s new baby brother Nathan Kris Lee!  God brought him into this world on August 9th.  Nathan was a huge 9lbs 5 ounces!  We can’t express enough in words how awesome God is!  He has continued to bless our family time and time again.  He was named Nathan after the Prophet Nathan in the time of King David, Nathan in Hebrew means “God has given”.  God has given us everything that is good and we praise Him by promising to give Him Nathan in service of His kingdom.  We did the SMA testing and the test says that Nathan has SMA, however we trust that God has a different answer.  We have adopted Psalm 118:17 as Nathan’s life motto, it says “I shall not die, but live and declare the works of the LORD”.  We believe that God can do EXACTLY what His Word says….Nathan will be an example of putting our faith in Jesus Christ as we believe he will grow up to show no signs of SMA and proclaim the saving Grace of our Lord and Savior.  Rejoice with us for Jesus has taken our transgressions upon the cross and therefore disease has no authority over our lives!!!

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Congratulations to our 2012 board members!

We had our first board of directors meeting on May 1st and have elected the following to the board:

  • President – Shane Lee
  • Vice Pres. – Jennifer Lee
  • Secretary – Susan Simmons
  • Treasurer – Derek Schmidt

These positions are 4 year terms, per our by-laws.  We will now be holding our meetings quarterly.  We look forward to continuing to raise awareness and funds for such a great cause.

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2012 Golf Tournament – Thank You!

1000105 Th 2012 Golf Tournament   Thank You!

2012 Annual Golf Tournament

Wow, what a day!  We had a great outpouring of love and support for a successful 4th Annual Golf Tournament today.  Thank you to all who came out to support such a great cause.  100% of the proceeds today went to Families of SMA (www.fsma.org).

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