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GiveSendGo.com Free Christian Crowdfunding Jacob’s Journey

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Campaign Created by:
Brooke Driver Garland, TX Follow

$2,930 of $25,000

12 % Complete 18 donation(s)
9

If you've met Jacob, you know his smile can light up a room and his personality is one of a kind. He is one of the brightest, most polite and funny kiddos I know.. not to mention, he's CUTE! If you know his parents, LeeAnn and John, you know he inherited all of these things from them. They are selfless, generous, thoughtful, caring, and kind. Please consider reading their story below... and loving them prayerfully and financially if you are able.
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The vast majority of the population has never heard of SMA until someone they know is diagnosed with it. The Loyd's had never heard of it either before Jacob’s diagnosis. Spinal muscular atrophy (SMA) is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. It is the number one genetic cause of death for infants. If you'd like to know more about the disease, please use the following link: https://www.curesma.org/about-sma/

SMA impacts the Loyd family in many ways...emotionally, physically, spiritually, and financially. This is where you come in. If you're like me, you wish you could do more than pray, encourage and listen. Now you can!
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If you've followed Jacob's story at all, you've learned about his "muscle juice" or Spinraza, the drug he receives as a treatment (not a cure, but management) for SMA. When Spinraza was first given as an option for Jacob, insurance declined to cover it. With some drugs, that is not as big of a deal, but Spinraza costs $150,000 per dose (yes, 6 figures!) Jacob receives this treatment by lumbar puncture every four months, indefinitely, until a future treatment is approved. Praise God that through an appeals process, the insurance approved to cover a portion of each treatment, but, as you can imagine... there is still a high out of pocket cost.



Jacob has gotten to know his doctors (neuromuscular specialist, pulmonologist, neurologist, cardiologist, and orthopedist to name a few) really well over the past couple of years. Frequent visits to these doctors to ensure he is progressing as he should means frequent medical bills.

Weekly "workouts" with his physical therapist and occupational therapist have assisted Jacob with gaining strength and coordination as well as taught LeeAnn and John how to best help with positioning and progressing the care plan with activities/exercises at home. Even as he gains strength and independence, therapy will be lifelong. He's won all his doctors and therapists over with his bright personality and smile, but unfortunately... that doesn't pay the bills!

Now that Jacob is getting older and even more social, it is becoming more important for him to have higher level of independence. Mom and Dad can't carry him into kindergarten after all. Due to decreased trunk control and lower tone from his SMA, Jacob will require a custom wheelchair...some cost as much as a car! Often times, even if insurace covers the chair itself, they won't cover custom features needed for the individual. Speaking of cars...the Loyd's will need one that can carry this new wheelchair.

As Jacob grows bigger and stronger, the different braces and supportive devices he uses have to be replaced. He uses custom AFOs (leg braces) that he sees an orthotist to be casted for, a standing frame to spend time in an upright position to weight bear through his joints, leg immobilizers to prevent contractures, and a custom-fitted back brace/vest to aid in postural support as recommended by his therapists.


Another complication with SMA is that when Jacob’s body/muscles relax and falls asleep he does not breath deeply enough. This requires Jacob to sleep with a bipap (breathing machine) every night. Because Jacob's chest muscles are weak, he is at higher risk of respiratory related complications and illnesses requiring him to use a "cough assist" machine two times a day. These devices are both rented at a monthly cost and the supplies for each have to be regularly replaced.

Because Jacob can't sit on his own for a long period of time or ever be unsupervised, many positional devices, pillows and chairs are necessary throughout the Loyd's home to keep him safe, including in their bathtub! Thankfully, many different chairs and seats exist to make bathing and daily activities easier and safer, but they come with price tags.


When taking Jacob out to eat, LeeAnn and John must consider his different allergies and intolerances while keeping in mind the metabolic impact SMA has and the energy expenditure to chew up his food, resulting in a packed meal complete with pureed foods, costly amino acid formula, carb powder, and many other vitamins/supplements (this goes for every meal at home as well).

Now you can imagine some of the different expenses they face on a daily basis, some obvious and others not as much. While insurance absolutely helps with the cost of some of the doctor's visits, medications, medical devices, braces, and a new wheelchair...much like your own insurance, there are still out of pocket costs for everything, and those costs add up. It also doesn't cover the wheelchair accessible vehicle they now need, nutritional expenses or many other "extras" we haven't even touched!

If you feel lead to donate, your generosity would bless Jacob and his family immensely. Your love, support and prayers mean the world to them.

Zerina Kurlancheek

2019-11-14 16:11:49

Heartbreaking, stay strong!!

Anonymous

2019-11-14 13:56:14

All the best to Jacob!

Martin

2019-11-14 13:41:25

Warm regards to the whole family!

Amy

2019-11-06 14:50:21

Prayers for this sweet boy and family.

Cathy Zmolik

2019-11-06 01:57:02

You are such an amazing family! Prayers for your sweet fam❤️

Dominic

2019-10-17 02:22:37

You both are an amazing example of Godly parents. Jer 29:11

Elizabeth J Hardy

2019-09-03 12:41:27

Praying this small amount will be multiplied by God!

Dana Dennison

2019-09-02 22:06:54

Prayers

Missy Woodard

2019-09-02 02:34:23

Promised prayers and love always for your family and this sweet angel

Whitney Tilley

2019-09-02 02:30:43

Praying fervently for your precious boy!

Kimberly Murray

2019-09-01 22:24:17

Praying for God to show just how miraculous He is, by blessing your beautiful son with strength and healing beyond understanding.

Anonymous

2019-09-01 22:07:15

We love you Jacob!

Campaign Creator Avatar
Campaign Created by:
Brooke Driver Garland, TX Follow

$2,930 of $25,000

12 % Complete 18 donation(s)
9

Recent Donations

$50

Zerina Kurlancheek

1 days ago

Heartbreaking, stay strong!!

$100

Anonymous Donor

1 days ago

All the best to Jacob!

$100

Martin

1 days ago

Warm regards to the whole family!

$100

Dan Mauro

6 days ago


$100

Amy

9 days ago

Prayers for this sweet boy and family.

$50

Cathy Zmolik

9 days ago

You are such an amazing family! Prayers for your sweet fam❤️

$200

Dominic

29 days ago

You both are an amazing example of Godly parents. Jer 29:11

$500

Anonymous Donor

32 days ago


$200

Mark & Kelly Jackson

69 days ago


$50

Leslie Calvert

73 days ago


$30

Elizabeth J Hardy

73 days ago

Praying this small amount will be multiplied by God!

$50

Michelle Gillum

73 days ago


$100

Dana Dennison

73 days ago

Prayers

$60

Delma A Dunton

73 days ago


$50

Missy Woodard

74 days ago

Promised prayers and love always for your family and this sweet angel

$150

Whitney Tilley

74 days ago

Praying fervently for your precious boy!

$40

Kimberly Murray

74 days ago

Praying for God to show just how miraculous He is, by blessing your beautiful son with strength and healing beyond understanding.

$1000

Anonymous Donor

74 days ago

We love you Jacob!

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