Germany; A Hope for Jaclyn's Eyes
Spende geschützt
Hi, My name is Jessica. I'm creating this fundraiser for my nine-month-old daughter Jaclyn.
Jaclyn's life has been very challenging since she was born; she has been in and out of hospitals for low blood sugar; we almost lost her. The average blood sugar is 125; hers was an 8. She also dealt with low body temperature, extremely high bilirubin, hypotonia (low muscle tone), ammonia not filtering out of her body (many metabolic issues), and now finding out she has Optic Nerve Hypoplasia. We need to get specialized treatment overseas, and I'm asking for your help to make that possible. Let me tell you more about it!
Optic nerve hypoplasia (ONH) is a congenital malformation consisting of small, underdeveloped optic discs causing visual impairment from birth. ONH is non-progressive and varies widely in severity, ranging from near normal central visual acuity to no-light perception in severe cases. Though typically found bilaterally, ONH may be present unilaterally as well. ONH accounts for approximately 15-25% of severe vision loss in infants, and when bilateral, 80% of patients fall into the classification of legal blindness. Jaclyn has ONH in both eyes.
Relating to the miswiring and maldevelopment of the central nervous system, the diagnosis of ONH has broad implications impacting ocular, neurological, and hormonal systems. Often first detected through ophthalmological evaluation, management of ONH requires a multidisciplinary approach and meticulous management due to frequently associated endocrinopathy, brain malformations, and developmental delays. Although no cure for ONH exists, timely intervention may minimize the impact of vision loss and generally improve development in these children.
Jaclyn has 20/200 vision along with nystagmus. Nystagmus is where your eyes have involuntary jerking movements because she can't see; she can't focus on an object to keep her eyes still. As far as we know, Jaclyn cannot see in either eye. She is considered legally blind in both eyes, but she does have light perception.
Not only does optic nerve hypoplasia affect Jaclyn's vision, but it also affects her brain. ONH could cause seizures, motor skill delays, learning delays, speech delays and issues with growth hormones. Jaclyn has been to many specialists so far. We have seen the neurologist for an EEG to scan for seizures that have come back normal but will routinely check for them. We have done MRIs and have been to the endocrinologist as well.
The findings in her MRI made me sink. Thankfully, there was no brain damage, which is very unlikely with her condition. Still, they found malformations in her brain's frontal lobe and deformities of her midline structure with apparent extra sutures. The frontal lobes of the brain not only help to control her eyes, but this part of her brain also controls seizures. We were told that children do not use this part of their brain until they are three to four years old, so we will not know if it affects her until then.
For a greater understanding, your retinas, for example, should be the size of a dime, hers are 85% smaller than they should be. Not only are her retinas underdeveloped, your optic nerves, which send pictures from the eyes to the brain and connect from the retinas to your brain, are very thin. Typically our optic nerves are the width of a tv cord, Jaclyns are the size of a cell phone cord. They both are highly underdeveloped. Being underdeveloped has caused her not to have the chance for glasses to improve her eyes.
Currently, in the United States, there is no cure. All of her doctors said there's nothing we can do. Well, I'm not taking that for an answer. There has to be something I can do, even if it helps a little.
After many hours of crying, being scared and not knowing what the future holds are, I started researching. I might have found a solution to help.
We are asking you to help us get to Berlin, Germany.
There is a place called Fedorov Restoration Therapy to see Dr. Anton Fedorov,
founder of Restore Vision Clinic, a pioneer of electrical stimulations.
Fedorov Therapy is meant to help your kid to regain eyesight naturally. Because children's brains are more easily molded, our therapy is directly beneficial to improving their vision.
Fedorov Restoration Therapy is a non-invasive and non-surgical way to restore or naturally improve vision, with stable outcomes and no side effects. These positive outcomes are accomplished through the application of weak electrical current pulses, which stimulate partially-damaged retinal cells and improve the conductivity of signals to the brain. Our therapy cannot replace damaged cells or regenerate optic nerves; instead, it increases the functionality of preserved cells on the retina and enhances the activity of the entire visual system.
Our family believes that with Jaclyns' thin optic nerves, we can help her at least see blurriness, silhouettes or maybe one day see our faces. We understand that her retinas are underdeveloped, but every time we see the ophthalmologist, her retinas have improved!
Retinas have regenerating cells and can only improve with time; optic nerves cannot. We can send signals through her optic nerves with restoration therapy to help Jaclyn see a better picture. It may not be a clear picture, but we will do everything we can to least help her see a little bit.
Upon researching this method, I was inspired by a girl named Layla. She was two years old with the same condition as Jaclyn, and now she is four years old and can 75% better, sees colors, and she walks independently! Their stories are listed on their website.
Each time we go, it will be a 2-week stay, ten sessions total. (30 sessions overall)
We plan to go as soon as possible and when she is two and possibly three years old.
For her first initial appointment, she will be evaluated by their team, and use technologies and machines we don't have here in the U.S! Listed below are what we will use for evaluation:
-broad Optical Coherence Tomography (Retina & Optic Nerve)
-comprehensive Visual Field testing (central and peripheral tests)
-check-up for visual acuity, contrast vision test, color blindness exam
-Electrophysiological exams (visual Evoked Potentials, Electroretinogram)
-intraocular pressure check-up
-automatic Refraction check-up
-consulting with the head of the clinic, Dr. Anton Fedorov
https://www.restorevisionclinic.com/ophthalmological-examination/clinical-evaluation-fedorov-restoration-therapy-berlin
THE BREAKDOWN
For them to do their own evaluation 1530 EUR= $1,534.64
treatment (10 sessions in a 2 week period) 6520 EUR= $6639.75
Total first time 8050 EUR= $8,074.39
2nd treatment (10 sessions in two week period)
6520 EUR= $6639.75
Possible 3rd treatment (10 sessions in two week period)
6520 EUR= $6639.75
Total treatment for all three times= $8,074.39+$6639.75+$6639.75=$21,353.89
For plane tickets(round trip) plus luggage for four people. Myself, My husband and both children (Jaclyn flies for free)
$1,500 per person(delta) includes luggage x 3 persons = $4,500 x 3 trips= $13,500
Hotel: Holidy Inn Berlin city Center East Prenzlauer berg
$153 a night, as of now.
153*14 days=$3,200 + tax $150 + local tax $107= $3,457 x 3 trips =$10,371
Hotel parking $16 a day . 14x16=224 x 3 trips=$672
Total $11,043
Car rental
Vip Cars at Berlin Airport
14-day car rental $1100 protection and collision included
$1100 x 3 trips = $3300
Parts of the money donated will also help us pay for all of our medical bills for Jaclyn and get her the equipment she needs to thrive and accomplish anything she wants without her eyes holding her back.
We thank you and appreciate every little bit of help. Whether donating money or sharing our daughter's story, everything counts! This fundraiser will be over the next couple of years, but if we can raise at least $18,000 for now, we will create the appointments and book the flights to leave for Germany!
I will update the fundraiser with her Facebook page so everyone can follow her accomplishments!
We have set up a T-shirt campaign as well!
THANK YOU SO MUCH!
"O Lord in heaven, I ask for divine healing from above. My eyes need your divine touch; please touch my eyes today so that I will be healed and see the glory of all the world around me Jesus name AMEN."
Organisator
Jessica Verellen
Organisator
Madison Heights, MI