Save Amelia’s Sight

AMELIA ROSE… The Story of a Tiny, Brave Warrior... who urgently needs your help to save her sight. 

Kindness is the language which the deaf can hear and the blind can see. - Mark Twain.


SUMMARY

Amelia an almost 5 yr. old, was born with WAGR, an ultra-rare syndrome. Last year it affected her kidneys and she had Wilms tumor and underwent chemotherapy, this year it’s affecting her eyes and she is quickly losing vision and going blind. In her right eye there is a large, fast-growing cataract and fogging lens combined with a few other eye conditions. Her local Dr. referred the family out of state to a specialist for a very delicate surgery to save Amelia’s vision, they will remove the cataract, lens and implant a lens and an iris prosthesis which will help with photophobia, glare and it will make colors and her vision more vibrant and clearer. Insurance does not cover the iris implant, the many trips the family will have to take from Seattle to Cincinnati and there’s a good chance it won’t cover most of the appointments and surgery due to the specialist being out of network and out of state. The most URGENT of funds needed is $10,000 which is due 3 months BEFORE the surgery, at that time they can place the order for the iris implant, then the family can schedule the surgery, that will save Amelia's sight.

An additional $10,000+ – includes the cost of the new lens, to be paid in full 3 weeks before surgery. This also covers some of the costs for travel during the surgical trip, as well as post-operative follow up visits. One post-operative visit 7 days after surgery, then again 3 weeks later and one trip every 2 months for the next 1-3 years, with yearly follow-up visits after that. If there are any complications, it’s crucial the family be able to get to Cincinnati at the drop of a dime.

Amelia isn’t able to verbally communicate when she is feeling pain or discomfort, so it’s crucial that her parents and Dr. Snyder keep a very close watch on the progress and healing… follow up appointments are crucial.

Because time is of the essence, we are coming to you for help. Please feel free to share this, and thank you for your generosity. 




***Please read below for full story and specific details. 


My name is Annie Kirk and I am Amelia’s GoGo (African word for grandmother). She pronounces it “DoDo”, and when I hear that, it melts my heart.
 
Almost 5 years old now, Amelia Rose is the light in my eyes, my heart’s joy and a rich blessing to all who know and love her. 5 years into her young life, this little girl has seen more suffering than most will experience in a lifetime.


Amelia was born with WAGR syndrome (an ultra-rare syndrome, less than 400 diagnosed cases worldwide). W stands for Wilms Tumor of the kidneys; A is for Aniridia which means Amelia has no irises and is legally blind, she also has nystagmus, strabismus, foveal hypoplasia and congenital cataracts. The G stands for Genitourinary anomalies and the R is for Range of developmental delays.

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Amelia is quite familiar with hospitals, spending many long days undergoing scans of her abdomen to check for any sign of Wilms tumor and signs of decreased kidney function; Amelia also has a very high risk of renal failure. Washington State provided Birth to 3 program from the fantastic, Childrens Therapy Center in Burien; for physical, speech, occupational and vision therapies in an attempt to give her the tools she needed to begin speaking and improving her balance. Special braces and footwear helped to strengthen her legs and her balance.

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Then, in 2017 as my daughter and family were about to leave for San Diego for a Christmas trip to visit family, they took Amelia for her regular kidney scans and received the devastating news that she had a tumor. All plans changed immediately and very soon this tiny little girl was undergoing heavy doses of chemotherapy which would last for about 8 months. They lived at the hospital and it broke our hearts to see how much body weight she lost and how frail she became. Through it all, she never complained about the pain, about the feeding tubes or discomfort. I am in awe of her parents who became educated and thoroughly knowledgeable and took care of her so amazingly well. After the tumor shrank enough, brilliant surgeons performed a partial nephrectomy, removing entirely what was left of the tumor and salvaging the rest of her kidney (Since she is always prone to get Wilms again, it’s crucial to preserve as much kidney as possible). Amelia goes for regular scans and now added bloodwork every three months, and she will continue these scans for the rest of her life.

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She is back at school, ecstatic to be able to run around with her little friends and she loves her Teacher Sharmaine and the teachers aids. Amelia has a wonderful sense of humor and loves to laugh. She loves music, books and creating art. Her Australian Shepherd, Doobie Dubai senses keenly her change in mood and will lie very close to her, calming her and restoring her peace. Doobie Dubai is an amazing help with Amelia, and her best friend.

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When Amelia plays outside, she wears dark glasses. Without irises, light floods into her eyes and she finds it difficult to use what little sight she has. Her eyes are also checked regularly for any new problems, and to see if her cataracts have grown. A few months ago, we all noticed that Amelia was holding her iPad closer, falling and tripping over things she normally wouldn’t have, and we could all see that the cataract had grown considerably, teachers and aids also noticed. Her vision therapist noted during their recent sessions, Amelia has in fact lost some sight.

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The Reason we need to raise funds so desperately...

Recently at an eye checkup, Amelia's ophthalmologist in Seattle referred Amelia to Cincinnati Eye Institute for further evaluation: Amelia was losing what little sight she had. Soon, her world would go completely dark. Her referral stated “Amelia Woertz to be seen and evaluated by Dr. Michael Snyder, for consideration of combined cataract surgery with IOS (intraocular lens) and iris prosthesis due to her Aniridia with cataract requiring complex anterior segment surgery. To my knowledge, the providers in our group and geographic area are not familiar or comfortable performing this surgery for Aniridia in pediatric patients.”

To explain a little further:
It is crucial the surgeon have lots of experience and the specific skillset to operate on aniridic eyes.  Not only do Aniridic eyes have less stem cells (can be very hard to heal and recovery from an operation) but the different layers in their eyes are much thinner than that of a typical eye and easily ripped, after surgery aniridic eyes have a very high risk of developing glaucoma, cornea and retina problems they also have a high risk of Aniridic fibrosis (which has no cure… it is very aggressive scar tissue that takes over the entire eye and causes total blindness). 


More bad news, but there is hope... 
Amelia’s parents made an appointment in May at CEI: Dr. Snyder felt comfortable with seeing her in three months to discuss options. However, a week later an urgent call from CEI, staff said Dr. Snyder received her records on disc from Seattle Children’s and after reviewing the records requested that Amelia fly out with her parents within a week. Dr. Snyder said that Amelia has now developed deprivation amblyopia due to the growth of the congenital cataract and fogging of her lens. Because of the worsening vision in her right eye a very poor- quality image being sent to her brain. Her brain still receives a somewhat clear image from her left eye. When these two images are being sent to the brain, the brain slowly starts shutting down the eye that is delivering the poor image. Around the age of 5 is when this really starts to take place, the further away from age 5 Amelia gets, the more likely she is to lose all sight in her right eye and can potentially go completely blind. Before developing amblyopia, Amelia's acuity was 20/400 in her left eye and 20/700 in her right eye with the congenital cataract… at her last exam it was unclear what her acuity was in her right eye because they were unable to get an accurate measurement.

The plan:
Dr. Snyder to remove Amelia’s cataract and like any cataract surgery a lens is put in place (IOS- intraocular lens). Because the IOS will not cover the entire area that her natural lens does, and Amelia doesn’t have a natural iris- she also needs an iris implant, otherwise there will be a gap. Think of a round trampoline being the IOS and the springs are what hold the IOS in place in her eye. Without the iris implant this gap can cause glare that can skew her vision and dull colors with sometimes bright halo or arc that reflect off the man-made ridge of the lens. The artificial iris will correct that gap and reduce glare and increase vibrancy.


Amelia’s need is now at a point that we can no longer wait. She needs highly technical surgery, including a lens and iris implant immediately, very advanced procedures that although FDA approved, still lack appropriate codes to secure insurance coverage.


The iris implant takes 3 months to create and must be paid for in full before the order can even be placed, this is because it is not covered by insurance. And with time being of the essence, and her age being critical, it is crucial that funds are available to pay for this the implants as soon as possible.



The Funds

-$10,000 - this will be paid to the hospital 3 months before surgery, to pay for the Iris Implant which will be designed in Germany and shipped to Cincinnati.

-An additional $10,000+ – includes the cost of the new lens, to be paid in full 3 weeks before surgery. This also covers some of the costs for travel during the surgical trip, as well as post-operative follow up visits. One post-operative visit 7 days after surgery, then again 2 weeks later and one trip every 2 months for the next 2-3 years, with yearly follow-up visits after that. If there are any complications, it’s crucial the family be able to get to Cincinnati at the drop of a dime.

Amelia isn’t able to verbally communicate when she is feeling pain or discomfort, so it’s crucial that her parents and Dr. Snyder keep a very close watch on the progress and healing… follow up appointments are crucial.



As a family, we are excited, filled with anxiety, but hopeful and very grateful for anyone who extends a kind hand towards Amelia.

TO HELP US GET THE WORD OUT, TO SAVE AMELIA'S SIGHT... PLEASE SHARE THIS LINK ON SOCIAL MEDIA. Thank you. 

We will be posting updates and photos of Amelia on her journey.

From the bottom of our hearts, 
Thank you.
Annie and family

FYI: Amelia’s father, Tom Woertz is handling all funds.... he is making payment to CEI for the devices and making arrangemts for all travel plans.

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Fundraising team (4)

Melissa Kirk 
Organizer
Seattle, WA
Tom Woertz 
Beneficiary
Antoinette Kirk 
Team member
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