Long Story Longer

So for the past 2 months, my daughter and I have temporarily been living away from home. She is currently at day 63 post-infusion of an autologous (‘auto’ means self) bone marrow transplant for her genetic deficiency, Leukocyte Adhesion Deficiency or L.A.D. Type 1. This rare genetic deficiency has been reported to affect fewer than 400 individuals worldwide, 75% have severe form, expressing less than 1% of the CD18 gene. There are 3 types, type 1 is the most common of the 3. Marley went undiagnosed until she was 8 years old, unrecognized until she was 3 years old. This is typical with most genetic deficiencies, where some many not have their deficiency recognized until they are an adult.

Let’s get technical for a minute –

So to explain L.A.D. a little more, first you must have a general knowledge of how you are genetically made. But don’t worry, I’m not going into that much detail.  I probably wouldn’t explain it correctly anyway, but I have taken Biology and I’m sure you have too. I also know God made each of us special and unique. For we are fearfully and wonderfully made – Psalm 139:14 So we know that Marley received genetic makeup from myself and her biological father (I express the word ‘biological’ here for a reason, I recommend you read my other blogs to understand why). Well, I carry 1 mutated gene and so does her biological father (which in us are recessive genes… boy, my Biology teacher would be so proud of me!). Yet, Marley received both (1 from me and 1 from her biological father) so they became dominant in her. For this to happen is a 25% chance! Thus her CD18 is now mutated. Which means part of her immune system, does not work probably.

What the future holds-

We don’t know what the future will hold but you know who does, our Heavenly Father. He has it all planned out and I have learned to have faith and hope. Marley continues to do well. She goes weekly to have lab draws, so far her counts are slowly coming up. Her CD18 gene pre-transplants was below 1%. To date, it is much higher and we continue to pray it either goes up or holds steady. In actuality, an immune system can function normally at 5% or higher. However, we won’t know exactly where that number will land for several more months or even years.

What I do know is that God is in control and he has made Marley special for a reason. So far she has been a light for me and so many others. Even when life is hard, God has put us there for a reason. I believe I’ve been put here to grow in my faith and help others find theirs.

Verses that have kept me going –

There are SO many but here are just a few key ones. However, my list continually grows.

Jeremiah 1:15 – I knew you before I formed you in your mother’s womb. Before you were born I set you apart.

Psalm 139:14 – You are beautiful for you are fearfully and wonderfully made.

Romans 12:12 – Be happy in your hope, stand your ground when you’re in trouble, and devote yourselves to prayer.

Isaiah 58:11 – The Lord will guide you continually and provide for you, even in parched places.

Matthew 28:20 – I myself will be with you every day until the end of this present age.

1 Thessalonians 5:17 – Pray continually.

Matthew 17:20 – Faith can move mountains.

Jeremiah 29:11 – I know the plans I have in mind for you, declares the Lord; they are plans for peace, not disaster, to give you a future filled with hope.

1 Corinthians 1:9 – God is faithful.

I also have three important life mantras –

Faith over fear

what if = fear even if = faith

it just so happens, never just happens

Links to further study L.A.D. if you wish –

https://rarediseases.org/rare-diseases/leukocyte-adhesion-deficiency-syndromes/ – This website explains it best. 

http://www.info4pi.org/

https://emedicine.medscape.com/article/887236-treatment

Organizations that have been a true blessing to us during this whole process  (please go check them out and donate if you can) –

Once Upon a Room – https://www.onceuponaroom.org/

Children’s Miracle Network – https://ufhealth.childrensmiraclenetworkhospitals.org/

Lucys Love Blankets – @lucysloveblankets on IG

Make A Wish – https://cnfl.wish.org/

Give Kids the World Village – https://www.gktw.org/

Wigs for Kids – https://www.wigsforkids.org/

Plus we have been blessed with ChildLife and so many smaller non-profits organizations. I hope that I will be able to do all I can to pay it forward.

Other organizations that support genetic and rare deficiencies –

The Mighty – https://themighty.com/

IDF  – https://primaryimmune.org

If you would like to read our daily updates check out our group page on Facebook – Hope for Marley @ https://www.facebook.com/groups/442390879910613/