SMA Type 1

Florence Marigold Evanow

Florence Marigold

 
Yesterday I received an email for a prayer request for a beautiful 18 month old girl named Florence Marigold.

Here is the email...

Hi there,
My parents are friends with the Unrau's ( Jordan Unrau). I came across your page while looking for Jordan's memorial service video.
I have a prayer request!
My daughter Florence (age 18 months) has SMA type 1. Prognosis is not good (most little ones die before their second birthday).
I blog at www.michaelaevanow.com
About our life. We need a miracle and breakthrough. She is getting weaker, and if she gets a cold it could be very serious and life threatening. Yes, just a simple cold.
She has very low muscle tone, so her body can't do much. Since our last visit to the ICU, which was 6 weeks, she's had a feeding tube put in and non invasive breathing support for night time.
All I can say is we need a creative miracle.

Michaela blogs at Michaela Evanow a mamma on a journey of faith. Let's storm the heavens with our prayers for a creative miracle for Florence. Our Father is Healer and all Florence needs is for Father to say the word and she will be healed, in the name of Jesus Christ.

Here is a brief description of SMA Type 1, Spinal Muscular Atrophy,

The diagnoses of type 1 SMA is usually made when the child is between 3 – 6 months of age. This is the most severe form of SMA. Some mothers even notice a decreased movement in the final months of her pregnancy. A child with type 1 is typically never able to lift his/her head or accomplish the normal gross and fine motor skills expected early on in infancy. They generally have poor head control, and may not kick their legs as vigorously as they should. They typically never bear weight on their legs or sit unsupported. Swallowing and feeding may be difficult and are usually affected at some point, and the child may show some difficulties managing their own secretions. Tremors can be seen on the tongue. There is weakness of the intercostal muscles (the muscles between the ribs) that help expand the chest when breathing. The chest is often smaller than usual, giving the trunk a bell shape. The child with SMA type 1 generally uses the diaphragm to breath, giving them the appearance to breathe with their stomach. Due to this type of breathing, the lungs never fully develop, the child has a weak cough. They may have a difficult time taking a deep breath while sleeping, affecting their ability to maintain normal oxygen and carbon dioxide levels.

How the effects of a fallen world are hurting our children! Oh Jesus, please come soon!!

As always, I thank you for your prayers. Father is hearing us, we need to be faithful in upholding those who are in need.

Psalm 91 NIV
Whoever dwells in the shelter of the Most High
will rest in the shadow of the Almighty.a
I will say of the Lord, “He is my refuge and my fortress,
my God, in whom I trust.”
Surely he will save you
from the fowler’s snare
and from the deadly pestilence.
He will cover you with his feathers,
and under his wings you will find refuge;
his faithfulness will be your shield and rampart.
You will not fear the terror of night,
nor the arrow that flies by day,
nor the pestilence that stalks in the darkness,
nor the plague that destroys at midday.
A thousand may fall at your side,
ten thousand at your right hand,
but it will not come near you.
You will only observe with your eyes
and see the punishment of the wicked.
If you say, “The Lord is my refuge,”
and you make the Most High your dwelling,
no harm will overtake you,
no disaster will come near your tent.
For he will command his angels concerning you
to guard you in all your ways;
they will lift you up in their hands,
so that you will not strike your foot against a stone.
You will tread on the lion and the cobra;
you will trample the great lion and the serpent.
“Because he loves me,” says the Lord, “I will rescue him;
I will protect him, for he acknowledges my name.
He will call on me, and I will answer him;
I will be with him in trouble,
I will deliver him and honor him.
With long life I will satisfy him
and show him my salvation.”

Praying and praying,
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