A child with SMA

An old friend I used to work with in Rochester, had a daughter born with SMA (spinal muscular atrophy). Luckily, they were able to detect her condition quickly and early. Braylin is still holding on at 15 months after 1 year ago this month she was was diagnosed. It is a horrible genetic terminal illness.
Spinal Muscular Atrophy (SMA) is a motor neuron disease. The motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing. It is a relatively common "rare disorder": approximately 1 in 6000 babies born are affected, and about 1 in 40 people are genetic carriers. Sad thing is you wouldn't even know if you are a carrier unless you had some genetic testing done during your pregnancy. Usually healthy pregnant women do not have that test done. I know I never did with any of my pregnancies.
SMA affects muscles throughout the body. Weakness in the legs is generally greater than in the arms. Sometimes feeding and swallowing can be affected. Involvement of respiratory muscles can lead to an increased tendency for pneumonia and other lung problems. Sensation and the ability to feel are not affected. They are more susceptible to other illnesses ,since they have a weak immune system. Intellectual activity is normal and it is often observed that patients with SMA are unusually bright and sociable. There is little known of this disease among the general population. Parents who have and have had children with SMA are trying to do more to bring it to the attention of researchers to find a cure for the genetic fatal disease. The parents of SMA children go thru a hell that test your relationship, patience, strength, and faith in God. When I read their journals about their sweet little girl, I usually ends up in tears.  I don't know how they do it! It gives a new perspective on life.
Their strength is a testament of their love to Braylin and to each other. One day after reading their journal, I came up with this and thought I would share it on my blog. I feel comfortable posting this as I have shared it with them and they were touched and appreciated it. I hope SMA is disease that will be cured and people will become more aware of this disease.

An Angel entered our world

Braylin, a sweet baby girl

To love and to hold

A perfect little child

but may be just for a little while

that Is what the Drs say

But you keep defying those odds every day.

Chubby cheeks and big blue eyes

When she cracks a great big smile

It’ll get you every time

Love little things and surprises

Like holding you so tight

Tucking you in at night

Laying by your side

Wiping the tears aside

As you keep fighting for your life

This pain we feel

It Cuts like a knife

We just keep taking it one day at a time

This was not in the plans

And we are doing all we can

Surrounded by love of family and friends

He’s got you in his hands

Here today, or gone tomorrow

How long until that day of pain and sorrow

When he is calling you by name

We can’t explain

Now how our life is forever changed

No one can seem to know

The emotions that come and go

Or how much mommy and daddy love you so

When I look to the stars above

I’ll be sending you all my love

That twinkle so far away

Will be better than a wave

And then I faintly hear you say:

Mommy and daddy I’ll be okay

It’s better than the books you read to me

Bigger than the deep blue sea

More beautiful than you can believe

Even better than your dreams

Close your eyes and you will see

He has me wrapped in love, peace, and harmony

Don’t you worry about me.

We will meet again

When our journeys come to an end

I can run to you and take you in my arms

And never let go

For Jesus Loves me this I know

You and daddy told me so

And I love you both more than you’ll ever know!

~Allison Jacobson