Henley's medical bills & equipment

$22,140 of $25k goal

Raised by 227 people in 10 months
Melanie Aitken
on behalf of Nicole Pulliam
 QUINCY, IL

Our granddaughter, Henley Laura Pulliam, was born on July 8, 2015 with a rare condition called Hydrops Fetalis. It is a life-threatening condition where there is an abnormal collection of fluid in at least two fetal organ spaces.  Up to 90% of babies diagnosed with Hydrops do not make it home from the hospital. Luckily, Henley survived and is about to celebrate her first birthday!

 The complications at birth, however, have created a number of other issues. Henley has been diagnosed with epilepsy and experiences approximately 100 seizures daily. She has also been diagnosed with cortical vision impairment (CVI), a visual impairment which occurs due to injury of the brain, and she sees at around 13% of what most babies do. There are also several other issues that cannot be diagnosed until she’s a little older, one of which could be Cerebral Palsy. Henley currently weighs 16 pounds and weight gain is a struggle due to Henley's tight muscles. Her tight muscles cause pain and limit her physical coordination.

 Henley sees physical, occupational, and vision therapists weekly and sees doctors, neurologists, and other specialists on a monthly basis or as needed. She has an average of 16-20 medical appointments per month, about half of which she must travel 2 hours to get to.  She takes six different medications at this point. Even with good insurance, her parents are overwhelmed with medical bills and occasionally have to dispute coverage on certain tests, medicines, or therapy.

Our goal is to ease the financial burden so Henley’s parents can focus on her health, minimize her seizures and continue to pursue advancements in her vision and physical therapies.

Henley loves to be swaddled and held tight. Henley loves to be outside (with sunglasses to protect her vision) and she loves water—baths, pools, anywhere she can float and relax her muscles. Henley has 2 teeth and loves apples, blueberries, and mashed potatoes. Henley can see the color red the best and enjoys following light.  More often than not, though, Henley is fussy or crying so we want to bring as much happiness and opportunity to her life. Henley’s family would be thankful for any help you can offer so that they can focus on Henley's recovery. We also appreciate your positive thoughts and prayers.

 

With love and thanks to all,
Henley's Family
(The Meyer, Aitken, and Pulliam families)
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Update 6
Posted by Melanie Aitken
27 days ago
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Update 5
Posted by Melanie Aitken
27 days ago
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Finally we can be fully submerged in the tub for bath time (our favorite time of day)! Because of all of our loving and generous donors, we are able to get the special equipment Henley needs :) We love our new SPLASHY! We are so thankful for all of you! More pictures to come...
so relaxed in my splashy seat
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Update 4
Posted by Melanie Aitken
1 month ago
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Thanks to everyone here, we do get the help we need! Eternally grateful for every donation❤
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Update 3
Posted by Melanie Aitken
4 months ago
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Good Morning & Merry Christmas Eve-Eve! Before we celebrate the holidays and head into the new year we wanted to share some updates on what's been going on in these last couple busy months! In July, Henley was formally diagnosed with Cerebral Palsy. She still has seizures, but doctors are working to get those under control. She was having issues with feeding and losing weight, so in November, a G tube was placed in her belly. Her food is administered through the tube using a machine and it goes directly to her stomach. The main challenge Henley faces in the coming year is getting her feeding on track so that she will gain weight and grow and keeping the seizures under control. Our goal is to get her feeding by mouth again.
Also, in October, it was learned that she is far-sighted in addition to her early diagnosis of CVI (cortical vision impairment). Henley got a cute pair of teal glasses in hopes this can help in some ways with her vision.
Thank you to everyone for the continued support without much update for a few months. The next steps as Henley grows will be to get her a feeder chair and a stander that will help in her therapy and standing goals. Our family thanks you all for your continued support and generosity. We wish you a very Merry Christmas & a Happy and Healthy New Year!
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Read a Previous Update
Harley Anthony
9 months ago

She's beautiful and a true fighter (runs in the blood)! We send our love and will continue to add Henley and the rest of the family in our prayers. ♡

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$22,140 of $25k goal

Raised by 227 people in 10 months
Created June 22, 2016
Melanie Aitken  
on behalf of Nicole Pulliam
$250
Anonymous
16 days ago
AH
$100
Anna Hechler
16 days ago
JB
$25
JoAnna Barton
18 days ago

In honor of all of Amy's hard work to get Healthy for Henley!

DC
$50
Denise Carlson
22 days ago
CM
$30
Caitlin Munguia
25 days ago
UJ
$50
Ursula Jones
25 days ago
$50
Kathy Roellchen
26 days ago

We love you baby Henley! ❤️

JS
$50
Janet Scoggan
1 month ago

<3

AK
$100
Allison Kleifield
1 month ago
$500
Anonymous
1 month ago
Harley Anthony
9 months ago

She's beautiful and a true fighter (runs in the blood)! We send our love and will continue to add Henley and the rest of the family in our prayers. ♡

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