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Battens Awareness for Jack

Kids - Slim Fit T-Shirt (Bella + Canvas - Youth Short Sleeve Crewneck Jersey T-Shirt - 3001Y)

[RUN SMALL]

Built tough for active kids, this 100% combed ringspun cotton tee is great for sports teams.

  • 4.2 oz., 100% combed ringspun cotton, 30 singles
  • Dark Grey Heather is 52/48 cotton/polyester
  • Triblends are 3.4 oz., 50/25/25 polyester/cotton/rayon, 40 singles
  • Unisex sizing
  • Set-in collar and hemmed sleeves
  • Youth sizes: S(6/8), M(10/12), L(14/16) - We recommend going to next size or two depending on kid's size.
 S (6-8)M (10-12)L (14-16)
Width 15.25" 16.25" 17.25"
Length 21" 22" 23.25"

How to measure
Lay your favorite shirt flat. Using a tape measure, measure the width across the chest from armpit to armpit. Next, measure the length from the top part of the collar down to the bottom hem.

spec-sheet-Q800

  • Canvas Promotional Tote - Q800

     
    • 12.0 oz., 100% heavy canvas
    • 20" web canvas handles, 9" drop
    • 15"W x 16"H (Natural), 14"W x 16"H (Colors)

Mens - Slim Fit T-Shirt (Bella + Canvas - Unisex Short Sleeve Jersey T-Shirt - 3001)

Body conscious jersey is tailored for a custom contoured fit.

  • 4.2 oz., 100% combed ringspun cotton, 30 singles
  • Athletic Heather is 90/10 cotton/polyester alternate Heather colors are 52/48 cotton/polyester
  • Ash is 99/1 cotton/polyester
  • Shoulder to shoulder taping
  • Coverstitched collar and hemmed sleeves
 XSSMLXL2XL3XL4XL
Width 16.5" 18" 20" 22" 24" 26" 28" 30"
Length 27" 28" 29" 30" 31" 32" 33" 34"

How to measure
Lay your favorite shirt flat. Using a tape measure, measure the width across the chest from armpit to armpit. Next, measure the length from the top part of the collar down to the bottom hem.

Help us raise awareness through the end of the month for our boy and for families that are suffering from this terrible diagnosis.

  All funds raised will go towards Battens Awareness, Research, and Support at BDSRA
Time left to buy
$2,165Raised
$1,000goal
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This campaign is closed. Send a message to the creator of this fundraiser and ask them to relaunch it.

Full story

Late March I noticed that Jack had a tiny tremor in one of his hands. Then It progressed to his legs which lead us to take him into the ER. Paired with a follow-up visit to the neurologist and a 2 hour EEG they said Jack had benign shuddering spells which babies sometimes have and grow out of. A month passes and the tremors got worse, to the point that it began to knock Jack over as he walked. So we requested a longer EEG which would be 24-48 hours (this was tough.) Thankfully we only had to stay a day at the hospital for the study because at the 24-hour mark they decided Jack was epileptic and they started him on meds which immediately stopped the seizures. So it was then at the end of May that Jack was diagnosed with epilepsy and the doctors ordered metabolic and genetic testing to see if we could figure out what was causing his epilepsy.
Flash forward to August 12th, I'm 9 months pregnant with June and we get back Jack's genetic test results saying that he carries the gene for CLN1 - informally known as Battens disease. Batten Disease (Neuronal Ceroid Lipofuscinoses – NCL) is an always fatal inherited disorder of the nervous system that manifests itself in childhood. There are 7 different kinds of genes that are affected by Battens (CLN 1,2,3,4,5,6, and 7.) Jack has CLN1 and this is the gene that affects them in the second year of life, the other genes are affected later and later in childhood. Unbeknownst to us, Stephen and I apparently carry one half of this terrible disease and happened to meet and fall in love and each of our children has a 25% chance of being affected by this disease.
Currently, we are awaiting a couple of different clinical trials that will be able to stop the progression of the disease for Jack. Jack has a great team including an awesome genetic counselor, therapy teams, daycare ladies, and neurologists that are a part of this clinical trial. Amazingly enough, this is all happening in our own backyard through UT Southwestern. TAYSHA gene therapies, has funded the clinical trial and it is being pushed forward on their end, but due to a recent change in the clinical trial it has to be re-approved by the FDA (who are swamped with COVID.)
2 more things - June has received her genetic test results and she is only a carrier of the disease like Stephen and I and will not be affected. JJ is next to get tested to see if she also carries my half. These are tough conversations we will have to have with our girls and we also plan to let the rest of our family know which side of our maternal/paternal side it falls from.
Lastly - you'll ask, what do we need? We've had a lot of support from the PD, GTC family, and our CCF neighborhood. We've adjusted to the new normal and ride the waves. We are taking care of ourselves mentally and physically with outside help. We need all the thoughts/prayers/vibes that you have. We need awareness and any connection you think that will help get a foot in the door to get this trial started for Jack. Because this disease is ugly. Our son has stopped walking. He has stopped talking. His smiles are very few and far between and he is starting to lose complete control of his hands. We HAVE to get him into this trial before the end of March 2022 before he is no longer a good candidate for this trial. The outpatient procedure replaces that missing gene into his spinal cord and the hope with Jack's gene type of Battens is that he is so young and still has so much growth to go that he will be able to regain what he has lost and continue to progress. He's lost so much already. This is where we've been. We've been staying strong like Jack.

Kids - Slim Fit T-Shirt (Bella + Canvas - Youth Short Sleeve Crewneck Jersey T-Shirt - 3001Y)

[RUN SMALL]

Built tough for active kids, this 100% combed ringspun cotton tee is great for sports teams.

  • 4.2 oz., 100% combed ringspun cotton, 30 singles
  • Dark Grey Heather is 52/48 cotton/polyester
  • Triblends are 3.4 oz., 50/25/25 polyester/cotton/rayon, 40 singles
  • Unisex sizing
  • Set-in collar and hemmed sleeves
  • Youth sizes: S(6/8), M(10/12), L(14/16) - We recommend going to next size or two depending on kid's size.
 S (6-8)M (10-12)L (14-16)
Width 15.25" 16.25" 17.25"
Length 21" 22" 23.25"

How to measure
Lay your favorite shirt flat. Using a tape measure, measure the width across the chest from armpit to armpit. Next, measure the length from the top part of the collar down to the bottom hem.

spec-sheet-Q800

  • Canvas Promotional Tote - Q800

     
    • 12.0 oz., 100% heavy canvas
    • 20" web canvas handles, 9" drop
    • 15"W x 16"H (Natural), 14"W x 16"H (Colors)

Mens - Slim Fit T-Shirt (Bella + Canvas - Unisex Short Sleeve Jersey T-Shirt - 3001)

Body conscious jersey is tailored for a custom contoured fit.

  • 4.2 oz., 100% combed ringspun cotton, 30 singles
  • Athletic Heather is 90/10 cotton/polyester alternate Heather colors are 52/48 cotton/polyester
  • Ash is 99/1 cotton/polyester
  • Shoulder to shoulder taping
  • Coverstitched collar and hemmed sleeves
 XSSMLXL2XL3XL4XL
Width 16.5" 18" 20" 22" 24" 26" 28" 30"
Length 27" 28" 29" 30" 31" 32" 33" 34"

How to measure
Lay your favorite shirt flat. Using a tape measure, measure the width across the chest from armpit to armpit. Next, measure the length from the top part of the collar down to the bottom hem.

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