Support 5 Year Old David Unexpectedly Going Blind
Donation protected
Hello and thank you for taking some time out of your day to read about my friends and the tough situation they’ve been thrust into. Whether or not you choose to donate to the Grant family after reading this, please know that just taking the time to stop by is very much appreciated. If you feel motivated to share their story with others, please feel free to do so. Everything helps in a situation like theirs.
For those of you that may not be familiar with the Grant family, they are a family of four that I think I can safely say is well liked and loved by most of the people they come in contact with. If for no other reason than their kids are just adorable
(Rachel, Dustin & their two young kids Kaylee-2 and David-5)
My name is Katy and I am happy to say that I am great friends with David's parents, Rachel and Dustin. Maybe more importantly, and how we’ve had the opportunity to become such great friends, is that my daughter Adalie has been “best friends” with David since they were infants. And in their adorable 5 year old way, they plan to marry each other when they get “older” (at age 7 if you ask my daughter)
The Grant family has had more than it’s fair share of heartbreak and difficult times in recent years, but 2019 has seen some major setbacks for them as a result of two major life altering issues happening at once. The biggest being their son David’s diagnosis with a rare progressive genetic disorder affecting his retinas and causing blindness.
David is 5 years old and a very imaginative, caring, kind-hearted, empathetic, and not to mention funny little boy.
David’s Story is a tough one for any parent to hear.
David has had vision problems since he was an infant, and received his first pair of glasses at just 9 months old. At that time he was diagnosed with hyperopia (farsightedness) and Congenital Nystagmus, which is a condition where his eyes shake uncontrollably. Unfortunately, this past summer in 2019, they discovered that David had been misdiagnosed for the last 4 years and that their journey was about to get infinitely harder.
In the fall of 2018, at David’s Pediatric Ophthalmologist appointment, Rachel was told that his Nystagmus was likely permanent at this point, and that if it weren’t for the Nystagmus, David’s eyesight would be “perfect”. The ophthalmologist said that his retinas looked good and his eyes were otherwise healthy. While the permanence of the diagnosis wasn’t a shock to Rachel or Dustin, they did start to suspect that maybe Congenital Nystagmus alone didn’t really explain the level of David’s visions issues.
Luckily, Rachel had been furiously researching Nystagmus and had gotten very involved in the online community of support groups and others impacted by the condition. It was that research and involvement that led them to a surgeon in California. This surgeon specializes in Nystagmus and had been developing a ground breaking surgery that dramatically improved the effects of Nystagmus in certain patients. And so, in mid-February of 2019, off to California they went to visit this specialist. They had high hopes that this specialist and his surgery would be the answer to David’s vision, or at least be able to point him next breadcrumb on their journey if he wasn’t.
Unfortunately, they were deeply saddened while in California, as they received the news that would change the lives of their entire family. The Nystagmus was likely not congenital, but rather a side effect caused by a more serious eye condition involving a retinal dystrophy. The doctor recommended they get a more comprehensive analysis via an ERG (think EKG but for the eyes).
As you can see, Rachel and Dustin have done everything imaginable for David up to this point, bringing him to multiple specialists, and spending countless sleepless nights doing their own research. So it’s no surprise that since finding out this news, they started pushing even harder. After faking their way through being happy on the Dumbo ride at Disney Land, they started the process of getting David scheduled for an ERG when they returned to Minnesota.
Within one short appointment at the Minnesota Lions Children’s Eye Clinic in early May, it was clear to the doctor that David did indeed have a retinal dystrophy and that an ERG would likely tell them more about the type and/or severity.
A few weeks later, they went in to the Children’s Hospital for the ERG procedure. David needed to be put under anesthesia for the ERG, as the procedure involves placing contact-like devices on the eye that submit electrical pulses and records how well the retinas respond. And here again is yet another moment filled with bad news. When the doctor came out to discuss the results, he pulled Dustin and Rachel into a room. He informed them that the results from David’s ERG were so poor that they actually switch machines thinking that the first one was broken!! The doctor recommended David to undergo genetic testing due to the results of the ERG.
David at the ERG procedure
Rachel being the most caring and wonderful mother to David
David wasn’t able to open his eyes 5 hours after the procedure, but he really enjoyed the grape popsicles afterward!!
June 25th of 2019 is when they were presented with the news that would change their lives forever. Dustin and Rachel received the call for the official results from the ERG, to find out that David’s diagnosis likely meant a progressive disease resulting in blindness. They were devastated! It really took them a few weeks to pick themselves off the ground and start trying to turn things into something positive. Did you hear that? Turn their and their son’s misfortune into something positive.
They started doing research until 3 or 4 am almost every night. They joined support groups in hopes of helping others avoid the same mistakes or misdiagnosis that they had. They even talked about starting a charitable organization one day to help support others going through similar situations.
As for the next steps though, they were referred to yet another specialist, but this time more local. It’s amazing how specialists always end up being “out of network” for insurance though.
With the help of this specialist, they verified what the ERG and the doctors at Lions had found, and brought David in for genetic testing. Unfortunately it takes a long time for these tests to be completed, which means they had to wait 2 entire months for an official diagnosis. Eventually in the fall of this year, the genetic testing came back and David was diagnosed with Leber Congenital Amaurosis (a form of Retinal Dystrophy) caused by a CRB1 genetic mutation.
There is currently no treatment for this diagnosis. There is some hope, as there are two clinical trials that have yet to be approved. These clinical trials, though, are based outside of the United States, one being in the Netherlands and the other in Dubai. If the clinical trials are approved, they have to make the decision to uproot their entire family to another country, or have one parent take him while the other parent stays here with their younger daughter, Kaylee. For related genetic mutations, though, there are approved treatments with great results. The treatment for these genetic mutations are similar to the not-yet-approved clinical trials for David’s genetic mutation of the CRB1 gene.
Rachel and Dustin don't know how quickly David will lose his sight, but it is progressing. The way the disease progresses is by first taking away David’s peripheral vision, then his ability to see colors, then his central vision after that. David compensates really well. To the point where others often don’t even know that he’s already legally blind with 20/200 vision at his last test. It’s even hard for Dustin and Rachel to tell sometimes. At David’s school conferences, his IEP Eye teacher shared the news that she discovered David needed to get 5 inches away from those big blue recycling bins to be able to tell what color they were. ☹
And to top off all of that heartbreak and consistent disappointment, David's mom Rachel was just diagnosed with breast cancer.
Cancer is awful, even for the strongest people with the most positive attitudes!
While she's going through treatment, her main concern is still David and staying positive for him. All she wants is for David to be healthy, happy, and be there for him while his life is changing. She swears and is determined to help him see in his life!
Dustin has been tasked with letting Rachel worry about her health, and that of David’s, while he takes care of them and everything else he can, including their beautiful and caring 2-year old daughter, Kaylee. Luckily they have great friends, family and co-workers that are doing their very best to chip in where they can. Which is great, because Dustin can’t cook and the kids were really getting sick of peanut butter sandwiches!
All this is enough to make even the best people give up and curl into a ball somewhere, but they will stop at nothing to help David.
With that being said, they have an insurmountable amount in medical bills and thus the debt that comes with paying those. In addition to this, they also have to make their house more accessible for David. Some examples of changes they need to make are-
-Rope lighting on their floor so he knows where the walls are
-Alexa-based equipment throughout their entire house so he can use his voice to turn off and on devices, such as the lights because he can’t see the light switch
-New stair risers and treading so they’re more safe and accessible for him
-New clothes with special stitching so David can feel the difference between the back and front of his clothes
-Start learning Braille
-He’ll likely have to walk with a cane
Rachel’s breast cancer treatment is mostly covered by insurance, but they’ll absolutely hit their max out of pocket next year, as they have the last two years as well. And then there are always the secondary expenses that nobody thinks of in these situations.
The journey has just begun for David and his family. My sincere hope, and those of their close friends helping them try to stay positive and focused on the future, is that we can find enough people willing to donate whatever they can so that we can try to take the weight of their financial concerns off of their plate as much as possible.
So with that, please consider supporting them throughout this, it is greatly and deeply appreciated!
The money raised will go to all of the medical bills that have accrued. Our goal is $40,000, but anything raised beyond that point will go toward future medical bills and loss of income for Rachel and Dustin with regards to Rachel’s Breast Cancer treatment and most importantly, future clinical trials or treatments for David. (for reference, the one similar FDA approved treatment for a similar eye condition would cost $900k and is not covered by insurance. Luckily, if David gets into a trial, the treatment would be free, but the flights and required follow-up appointments would not. Dubai and the Netherlands may be future flight expenses in their future)
The donations that are raised will go directly towards:
* $15k+ in specialist visits for David
* $5k+ in equipment expenses for David over the last two years (glasses, magnifying aides…)
* $15k+ in out of pocket medical expenses, deductibles, & secondary expenses for both David and Rachel
* $10k+ In loss of income for both Dustin and Rachel
Thank you all for taking the time to read this and being a part of the Grant family journey!
For those of you that may not be familiar with the Grant family, they are a family of four that I think I can safely say is well liked and loved by most of the people they come in contact with. If for no other reason than their kids are just adorable
(Rachel, Dustin & their two young kids Kaylee-2 and David-5) My name is Katy and I am happy to say that I am great friends with David's parents, Rachel and Dustin. Maybe more importantly, and how we’ve had the opportunity to become such great friends, is that my daughter Adalie has been “best friends” with David since they were infants. And in their adorable 5 year old way, they plan to marry each other when they get “older” (at age 7 if you ask my daughter)
The Grant family has had more than it’s fair share of heartbreak and difficult times in recent years, but 2019 has seen some major setbacks for them as a result of two major life altering issues happening at once. The biggest being their son David’s diagnosis with a rare progressive genetic disorder affecting his retinas and causing blindness.
David is 5 years old and a very imaginative, caring, kind-hearted, empathetic, and not to mention funny little boy.
David’s Story is a tough one for any parent to hear.
David has had vision problems since he was an infant, and received his first pair of glasses at just 9 months old. At that time he was diagnosed with hyperopia (farsightedness) and Congenital Nystagmus, which is a condition where his eyes shake uncontrollably. Unfortunately, this past summer in 2019, they discovered that David had been misdiagnosed for the last 4 years and that their journey was about to get infinitely harder.
In the fall of 2018, at David’s Pediatric Ophthalmologist appointment, Rachel was told that his Nystagmus was likely permanent at this point, and that if it weren’t for the Nystagmus, David’s eyesight would be “perfect”. The ophthalmologist said that his retinas looked good and his eyes were otherwise healthy. While the permanence of the diagnosis wasn’t a shock to Rachel or Dustin, they did start to suspect that maybe Congenital Nystagmus alone didn’t really explain the level of David’s visions issues.
Luckily, Rachel had been furiously researching Nystagmus and had gotten very involved in the online community of support groups and others impacted by the condition. It was that research and involvement that led them to a surgeon in California. This surgeon specializes in Nystagmus and had been developing a ground breaking surgery that dramatically improved the effects of Nystagmus in certain patients. And so, in mid-February of 2019, off to California they went to visit this specialist. They had high hopes that this specialist and his surgery would be the answer to David’s vision, or at least be able to point him next breadcrumb on their journey if he wasn’t.
Unfortunately, they were deeply saddened while in California, as they received the news that would change the lives of their entire family. The Nystagmus was likely not congenital, but rather a side effect caused by a more serious eye condition involving a retinal dystrophy. The doctor recommended they get a more comprehensive analysis via an ERG (think EKG but for the eyes).
As you can see, Rachel and Dustin have done everything imaginable for David up to this point, bringing him to multiple specialists, and spending countless sleepless nights doing their own research. So it’s no surprise that since finding out this news, they started pushing even harder. After faking their way through being happy on the Dumbo ride at Disney Land, they started the process of getting David scheduled for an ERG when they returned to Minnesota.
Within one short appointment at the Minnesota Lions Children’s Eye Clinic in early May, it was clear to the doctor that David did indeed have a retinal dystrophy and that an ERG would likely tell them more about the type and/or severity.
A few weeks later, they went in to the Children’s Hospital for the ERG procedure. David needed to be put under anesthesia for the ERG, as the procedure involves placing contact-like devices on the eye that submit electrical pulses and records how well the retinas respond. And here again is yet another moment filled with bad news. When the doctor came out to discuss the results, he pulled Dustin and Rachel into a room. He informed them that the results from David’s ERG were so poor that they actually switch machines thinking that the first one was broken!! The doctor recommended David to undergo genetic testing due to the results of the ERG.
David at the ERG procedure Rachel being the most caring and wonderful mother to David David wasn’t able to open his eyes 5 hours after the procedure, but he really enjoyed the grape popsicles afterward!!June 25th of 2019 is when they were presented with the news that would change their lives forever. Dustin and Rachel received the call for the official results from the ERG, to find out that David’s diagnosis likely meant a progressive disease resulting in blindness. They were devastated! It really took them a few weeks to pick themselves off the ground and start trying to turn things into something positive. Did you hear that? Turn their and their son’s misfortune into something positive.
They started doing research until 3 or 4 am almost every night. They joined support groups in hopes of helping others avoid the same mistakes or misdiagnosis that they had. They even talked about starting a charitable organization one day to help support others going through similar situations.
As for the next steps though, they were referred to yet another specialist, but this time more local. It’s amazing how specialists always end up being “out of network” for insurance though.
With the help of this specialist, they verified what the ERG and the doctors at Lions had found, and brought David in for genetic testing. Unfortunately it takes a long time for these tests to be completed, which means they had to wait 2 entire months for an official diagnosis. Eventually in the fall of this year, the genetic testing came back and David was diagnosed with Leber Congenital Amaurosis (a form of Retinal Dystrophy) caused by a CRB1 genetic mutation.
There is currently no treatment for this diagnosis. There is some hope, as there are two clinical trials that have yet to be approved. These clinical trials, though, are based outside of the United States, one being in the Netherlands and the other in Dubai. If the clinical trials are approved, they have to make the decision to uproot their entire family to another country, or have one parent take him while the other parent stays here with their younger daughter, Kaylee. For related genetic mutations, though, there are approved treatments with great results. The treatment for these genetic mutations are similar to the not-yet-approved clinical trials for David’s genetic mutation of the CRB1 gene.
Rachel and Dustin don't know how quickly David will lose his sight, but it is progressing. The way the disease progresses is by first taking away David’s peripheral vision, then his ability to see colors, then his central vision after that. David compensates really well. To the point where others often don’t even know that he’s already legally blind with 20/200 vision at his last test. It’s even hard for Dustin and Rachel to tell sometimes. At David’s school conferences, his IEP Eye teacher shared the news that she discovered David needed to get 5 inches away from those big blue recycling bins to be able to tell what color they were. ☹
And to top off all of that heartbreak and consistent disappointment, David's mom Rachel was just diagnosed with breast cancer.
Cancer is awful, even for the strongest people with the most positive attitudes!
While she's going through treatment, her main concern is still David and staying positive for him. All she wants is for David to be healthy, happy, and be there for him while his life is changing. She swears and is determined to help him see in his life!
Dustin has been tasked with letting Rachel worry about her health, and that of David’s, while he takes care of them and everything else he can, including their beautiful and caring 2-year old daughter, Kaylee. Luckily they have great friends, family and co-workers that are doing their very best to chip in where they can. Which is great, because Dustin can’t cook and the kids were really getting sick of peanut butter sandwiches!
All this is enough to make even the best people give up and curl into a ball somewhere, but they will stop at nothing to help David.
With that being said, they have an insurmountable amount in medical bills and thus the debt that comes with paying those. In addition to this, they also have to make their house more accessible for David. Some examples of changes they need to make are-
-Rope lighting on their floor so he knows where the walls are
-Alexa-based equipment throughout their entire house so he can use his voice to turn off and on devices, such as the lights because he can’t see the light switch
-New stair risers and treading so they’re more safe and accessible for him
-New clothes with special stitching so David can feel the difference between the back and front of his clothes
-Start learning Braille
-He’ll likely have to walk with a cane
Rachel’s breast cancer treatment is mostly covered by insurance, but they’ll absolutely hit their max out of pocket next year, as they have the last two years as well. And then there are always the secondary expenses that nobody thinks of in these situations.
The journey has just begun for David and his family. My sincere hope, and those of their close friends helping them try to stay positive and focused on the future, is that we can find enough people willing to donate whatever they can so that we can try to take the weight of their financial concerns off of their plate as much as possible.
So with that, please consider supporting them throughout this, it is greatly and deeply appreciated!
The money raised will go to all of the medical bills that have accrued. Our goal is $40,000, but anything raised beyond that point will go toward future medical bills and loss of income for Rachel and Dustin with regards to Rachel’s Breast Cancer treatment and most importantly, future clinical trials or treatments for David. (for reference, the one similar FDA approved treatment for a similar eye condition would cost $900k and is not covered by insurance. Luckily, if David gets into a trial, the treatment would be free, but the flights and required follow-up appointments would not. Dubai and the Netherlands may be future flight expenses in their future)
The donations that are raised will go directly towards:
* $15k+ in specialist visits for David
* $5k+ in equipment expenses for David over the last two years (glasses, magnifying aides…)
* $15k+ in out of pocket medical expenses, deductibles, & secondary expenses for both David and Rachel
* $10k+ In loss of income for both Dustin and Rachel
Thank you all for taking the time to read this and being a part of the Grant family journey!
Co-organizers (2)
Katy Wald
Organizer
Elk River, MN
Dustin Artwohl
Co-organizer