Feldman Shepherd
Trial lawyers for the most important things in life
PLEASE HELP DEZZIRAE ACCESS HER WORLD AND LIVE A BETTER QUALITY OF LIFE
Dear community,
Please allow me to introduce Dezzirae Woods, a happy-go-lucky little girl with profound faith in The Lord and a positive, upbeat attitude that does not let her unique abilities bring her spirits down.
She was born to her parents, David and Rachel, on Friday, April 22nd, 2011; and has fought many health battles since making her grand entrance into the world.
Shortly after birth, she was rushed to the Neonatal Intensive Care Unit (NICU) due to swallowing amniotic fluid and having low oxygen saturation which required close monitoring until Easter Sunday; when she got to go home and meet her two older siblings, Damien and Destiny.
Seemingly, she was healthy; and things appeared to be fine until Thursday, August 18th; when she went in for a routine check-up with her pediatrician at four days shy of four months old.
It was then, in the doctor’s office, that she displayed signs of labored breathing and discoloration which lead to her having a chest X-ray and being diagnosed with multiple congenital heart defects that required her to be transferred to our local children’s hospital and ultimately airlifted to Amplatz Children’s Hospital in Minneapolis, Minnesota; so that she could undergo open-heart surgery.
Unfortunately, the surgical procedure was postponed until Friday, September 2nd; due to her being put on a course of antibiotics after coming down with a urinary tract infection which is believed to have occurred because of a cardiac (heart) catheterization that she underwent; shortly upon arriving at the hospital.
Once Dezzirae’s aforementioned surgery and healing time were finally complete; she was seemingly healthy and things appeared to be fine…yet again.
Little did we know that in the not too distant future, she would face more trials and tribulations; and the faith of our family would be tested more than it had ever been before.
Fast forward, if you will, to Tuesday, September 18th, 2012.
That is the day she was scheduled for routine follow-up care with her cardiologist; but did not make it to the appointment since she had seizure like activity and we were directed by the emergency room doctor to speak with her pediatrician so that we could obtain a referral to a neurologist who would hopefully be able to determine the cause.
As luck would have it, the neurologist was unable to find the reason as to why the seizure like activity occurred; and so began our quest to seek answers.
It was a long and tempestuous journey, filled with a plethora of medical specialists and diagnostic testing, both at home, and at Mayo Clinic in Rochester, Minnesota, before our fourth extensive genetics test helped us to arrive at a conclusion on Friday, March 2nd, 2018.
That afternoon, she was diagnosed with Giant Axonal Neuropathy (GAN) which is an extremely rare and life-threatening neurodegenerative disease that she inherited from her mother, who, until that time, was an unknown carrier.
Typically, in order for a child to have GAN, both parents must be carriers of the disease; but there are instances such as ours, where only a singular parent is.
Now to those of you who are unaware…
Giant Axonal Neuropathy is a condition characterized by abnormally large and dysfunctional axons called giant axons.
Axons are specialized extensions of nerve cells (neurons) that transmit nerve impulses.
The signs and symptoms of GAN generally begin in early childhood and become progressively worse over time as they attack the peripheral nervous system, in which long axons connect the brain and spinal cord to muscles and sensory cells that detect sensations such as touch, pain, and sound.
However, axons in the autonomic and central nervous systems can be affected as well.
At first, most affected individuals have difficulty walking and tend to require the aid of orthotic leg braces, forearm crutches, or a gait trainer (walker) to ambulate (get around).
They may later experience numbness or loss of sensation, reflexes, and strength in their limbs; which can lead to involuntary functions, difficulty coordinating movements (Ataxia), and the required use of a wheelchair.
In some instances, they might also contend with constipation, a difficult time releasing urine (neurogenic bladder), restrictive airway disease and lung mechanics, chronic respiratory failure, sleep apnea, aspiration (breathing in) of food, heat intolerance, a reduction in or the loss of the ability to sweat, and vision and hearing issues as well.
As Giant Axonal Neuropathy worsens, paralysis, seizures, and a gradual decline in mental function (Dementia) may occur.
Beings that constipation, as previously stated, can be one of the many side effects of GAN, I feel that I should mention that since Dezzirae’s diagnosis, she has undergone surgery to place an Antegrade Continence Enema (ACE), so that she can fully void her bowels due to lacking the muscle tone to have a movement on her own.
That procedure took place on Tuesday, January 7, 2020; and aside from a few minor setbacks with leaking around the site, it has proven to be beneficial…so far.
To us, Giant Axonal Neuropathy is a cruel disease that robs children of their livelihood; and it breaks our hearts to know that most succumb to it in their late teens or early twenties.
Due to this and the fact that Dezzirae displays almost every symptom it so callously brings forth, we are trying to provide her with a sense of typicality by raising funds to help the precious little sweetheart access her world and live a better quality of life during the time that she has left with us.
It is our sincere hope that by choosing to fundraise with Help Hope Live, we can obtain enough to modify our bathroom with a walk-in shower; and purchase a wheelchair ramp, as well as a handicapped accessible van to get her to and from appointments in and out of state.
We also wish to use some of the funds to help cover any and all other expenses that are incurred because of Dezzirae’s condition.
Examples of this include medical devices and therapies that insurance does not cover, as well as meals and lodging when traveling out of state for procedures…just to name a few.
With that said, we humbly seek your assistance in this matter, as we simply can not do it without your kindhearted generosity and support.
Therefore, every prayer, donation, and sharing of this fundraising campaign will be greatly appreciated.
Thank you so very much for whatever help you are able to give; and may God richly bless you.
Sincerely,
The Woods family
Romans 5:1-5, King James Version (KJV)
Therefore being justified by faith, we have peace with God through our Lord Jesus Christ:
By whom also we have access by faith into this grace wherein we stand, and rejoice in hope of the glory of God.
And not only so, but we glory in tribulations also: knowing that tribulation worketh patience;
And patience, experience; and experience, hope:
And hope maketh not ashamed; because the love of God is shed abroad in our hearts by the Holy Ghost which is given unto us.
Updates (52)
September 18, 2020
Thank you to The UPS Store., located at 2601 South Minnesota Avenue, suite 105, in Sioux Falls, South Dakota; for generously printing several campaign flyers and raffle tickets for us to use in our fundraising endeavors, as well as waving the fee for them.
September 15, 2020
Hello everyone,
I just thought that I should take a few moments to update you in regards to Dezzirae’s latest medical goings on
With that said…
I can honestly tell you that the last two days have been extremely busy due to her having several doctors appointments at our local Children’s Specialty Clinic/Hospital.
In fact…
Yesterday, we met two new members of Dezzirae’s care team that we are beyond thrilled to know have her best interest at heart and are planing to join together with all of the other specialists she sees since they too, would like to help better her quality of life.
In case you are wondering…
One of them was a nephrologist who would like to run extensive tests in order to determine the cause of Dezzirae‘s edema (water retention) and rapid weight gain so that kidney failure, a thyroid disorder, and blood clots can hopefully be ruled out.
And…
The other was an incredibly compassionate geneticist who was able to eliminate most of our fears about the unknown while explaining Giant Axonal Neuropathy (GAN) in a way that no one else has ever been able to.
Not only that…
But he also pointed out a rarity in both Dezzirae’s and her Mom’s genetic make up that tends to cause pregnancies to end in miscarriage and how it is that she is even more of a miracle than what our family already knows she is.
(The same can be said for her siblings)
Aide from that…
This morning, we visited with her pulmonologist who gave us the wonderful news that her lung function seems to be somewhat improved now that she has a Trilogy machine (ventilator).
And…
We also got a good report from a member of the surgical team when she told us that her incision looks incredible and there is no irritation or granulation tissue as she was changing out her Antegrade Continence Enema (ACE).
So…
All in all, the past two days have been pretty good, and we could not be any happier than what we are right now.
September 14, 2020
Thank you to everyone who generously donated during the week of September 6th through the 12th.
September 7, 2020
Thank you to everyone who generously donated during the week of August 30th through September 5th.
September 6, 2020
Thank you to Last Stop CD Shop, located at 2121 East 10th Street, in Sioux Falls, South Dakota; for generously allowing Dezzirae’s Mom (Rachel) to place several event flyers at your location.
September 6, 2020
Thank you to Last Stop CD Shop, located at 3509 West 41st Street, in Sioux Falls, South Dakota; for generously allowing Dezzirae’s Mom (Rachel) to place several event flyers at your location.
September 6, 2020
Thank you to Courtyard By Marriott, located at 4300 West Empire Place, in Sioux Falls, South Dakota; for generously allowing Dezzirae’s Mom (Rachel) to place several event flyers at your location.
September 6, 2020
Thank you to Baymont Inn By Wyndham, located at 3200 South Meadow Avenue, in Sioux Falls, South Dakota; for generously allowing Dezzirae’s Mom (Rachel) to place several event flyers at your location.
September 5, 2020
Thank you to Quality Inn & Suites (South), located at 3216 South Carolyn Avenue, in Sioux Falls, South Dakota; for generously allowing Dezzirae’s Mom (Rachel) to place several event flyers at your location.
September 5, 2020
Thank you to Best Western (Empire Towers), located at 4100 West Shirley Place, in Sioux Falls, South Dakota; for generously allowing Dezzirae’s Mom (Rachel) to place several event flyers at your location.
September 5, 2020
Thank you to Eric, the assistant manager of Holiday Stationstore, located at 1737 South Cliff Avenue, in Sioux Falls, South Dakota; for generously offering to place event flyers at a few local business that he and his Mom frequent since corporate is not allowing such items to be placed at his location.
September 5, 2020
Thank you to FedEx Office Print & Ship Center, located at 3200 South Louise Avenue, in Sioux Falls, South Dakota; for generously printing several event flyers for us to use in our fundraising endeavors, as well as waving the fee for them.
September 5, 2020
Thank you to MobilityWorks, located at 200 East 1st Street, in Tea, South Dakota; for generously allowing Dezzirae’s Mom (Rachel) to place event flyers at your location.
September 3, 2020
Thank you to Alpha Graphics, located at 5020 East Tennis Lane, suite 1, in Sioux Falls, South Dakota; for generously printing several event flyers for us to use in our fundraising endeavors, as well as waving the fee for them.
August 31, 2020
Thank you to everyone who generously donated during the week of August 23rd through the 29th.
August 26, 2020
Thank you to Sioux Falls, South Dakota community member, Stacey Wilcox; for generously donating Gummy Worms, Sour Jacks Watermelon Candy, and a large bag of Dum•Dums Suckers for our family to place in an upcoming raffle.
August 24, 2020
Thank you to Sioux Falls, South Dakota community member, Dawn Talley-Leemhuis; for generously donating board games, coloring and activity books, crayons, markers, sidewalk chalk, puzzles, playing cards, bubbles, Play-Doh, slime, and noise putty; for our family to place in an upcoming raffle.
The sweet gesture that you made in honor of your beloved son David’s memory has truly touched our hearts, and we Can not thank you enough for all that you have done to help us.
August 24, 2020
Thank you to everyone who generously donated during the week of August 16th through the 22nd.
August 20, 2020
Thank you to The Printing Center Inc., located at 2701 South Minnesota Avenue, suite 8, in Sioux Falls, South Dakota; for generously printing several event flyers for us to use in our fundraising endeavors, as well as waving the fee for them.
August 18, 2020
Thank you to Sioux Falls, South Dakota community member, Amanda Loneman; for generously donating two beautiful wine glasses for our family to place in an upcoming raffle.
August 17, 2020
Thank you to Results Radio/Townsquare Media, located at 5100 South Tennis Lane, in Sioux Falls, South Dakota; for generously posting about Dezzirae and the upcoming fundraising event which is to be held at Texas Roadhouse on September 14th, 2020.
We sincerely appreciate your willingness to help us spread the news by sharing information on all seven of your Sioux Falls, South Dakota and surrounding area radio stations websites…once again.
August 17, 2020
Thank you to everyone who generously donated during the week of August 9th through the 15th.
August 15, 2020
Thank you to Midwest Communications Inc., located at 500 South Phillips Avenue, in Sioux Falls, South Dakota; for generously posting about Dezzirae and the upcoming fundraising event which is to be held at Texas Roadhouse on September 14th, 2020.
We sincerely appreciate your willingness to help us spread the news by sharing information on all six of your Sioux Falls, South Dakota radio stations websites…once again.
August 15, 2020
Thank you to Casey’s General Store, located at 509 West 5th Street, in Canton, South Dakota; for allowing Dezzirae’s Aunt (Bethanny Nyberg) to place donation jars and event flyers near your registers.
August 15, 2020
Thank you to Pump-N-Pak, located at 110 West 5th Street, in Canton, South Dakota; for allowing Dezzirae’s Aunt (Bethanny Nyberg) to place donation jars and event flyers near your registers.
August 15, 2020
Thank you to Pizza Ranch, located at 719 East 5th Street, in Canton, South Dakota; for allowing Dezzirae’s Aunt (Bethanny Nyberg) to place a donation jar and event flyer near your register.
August 15, 2020
Thank you to Dairy Queen Grill & Chill, located at 101 North Lawler Street, in Canton, South Dakota; for allowing Dezzirae’s Aunt (Bethanny Nyberg) to place a donation jar and event flyer near your register.
August 14, 2020
Thank you to Sioux Steel & HiQual Livestock Equipment, located at 415 East Industrial Avenue, in Lennox, South Dakota; for allowing a coworker/friend of Dezzirae’s Dad (David) to put an event flyer in your break room while they were visiting your location.
August 14, 2020
Thank you to Tranquility Therapeutic Massage, located at 1402 South Minnesota Avenue, in Sioux Falls, South Dakota; for generously donating a one hour massage gift certificate for our family to place in an upcoming raffle.
August 14, 2020
Thank you to Chameleon Hair Design, located at 4705 East 26th Street, in Sioux Falls, South Dakota, for generously donating items for our family to place in an upcoming raffle.
August 14, 2020
Thank you to Sky Zone Trampoline Park, located at 5129 South Solberg Avenue, in Sioux Falls, South Dakota, for generously donating items for our family to place in an upcoming raffle.
August 14, 2020
Thank you to Skate City, located at 2901 West 3rd Street, in Sioux Falls, South Dakota; for generously donating five family passes for our family to place in an upcoming raffle.
August 14, 2020
Thank you to Booze Boys, located at 500 South Cleveland Avenue, in Sioux Falls, South Dakota; for generously donating three bottles of wine for our family to place in an upcoming raffle.
August 14, 2020
Thank you to Skyway Liquor, located at 1101 North Minnesota Avenue, in Sioux Falls, South Dakota; for generously donating two bottles of wine for our family to place in an upcoming raffle.
August 14, 2020
Thank you to Chuck E. Cheese, located at 2600 South Louise Avenue, in Sioux Falls, South Dakota; for generously donating a filled gift bag for our family to place in an upcoming raffle.
August 14, 2020
Thank you to Applebee’s Grill + Bar (Empire mall, Sears wing), located at 4001 West 41st Street, in Sioux Falls, South Dakota; for generously donating six $10 gift certificates for our family to place in an upcoming raffle.
August 14, 2020
Thank you to Applebee’s Grill + Bar (East), located at 3221 East 10th Street, in Sioux Falls, South Dakota; for generously donating a $20 gift card for our family to place in an upcoming raffle.
August 14, 2020
Thank you to Minervas Restaurant, located at 301 South Phillips Avenue, in Sioux Falls, South Dakota; for generously donating a $25 gift card for our family to place in an upcoming raffle.
August 14, 2020
Thank you to Granite City Food & Brewery, located at 2620 South Louise Avenue, in Sioux Falls, South Dakota; for generously donating two $25 gift cards for our family to place in an upcoming raffle.
August 14, 2020
Thank you to Staples, located at 515 West 41st Street, in Sioux Falls, South Dakota; for generously printing several donation jar labels, event flyers, and donation in kind forms for us to use in our fundraising endeavors, as well as waving the fee for them.
August 13, 2020
Thank you to Sioux Steel Company’s corporate office, located at 196 1/2 East 6th Street, in Sioux Falls, South Dakota; for allowing a coworker/friend of Dezzirae’s Dad (David) to put an event flyer in your break room.
August 12, 2020
Thank you to Total Stop Food Store, located at 210 East 1st Street, in Alcester, South Dakota; for allowing Dezzirae’s Aunt (Bethanny Nyberg) to place donation jars and event flyers near your registers.
August 12, 2020
Thank you to Dezzirae’s beloved Aunt (Bethanny Nyberg); for your willingness to place donation jars and event flyers at several business in and around your area.
The help that you are providing for our part of the family is sincerely appreciated.
(WE LOVE YOU!!!)
August 10, 2020
Thank you to Texas Roadhouse, located at 4307 West Empire Place, in Sioux Falls, South Dakota; for generously donating two dinner for two gift certificates (valued at $30 each), as well as offering to host a Dine To Donate event on Monday, September 14th, 2020.
It is with the utmost sincerity that I say our family truly appreciates the fact that you are willing to help Dezzirae by donating 10% of the funds from every purchase made in her name.
August 10, 2020
Thank you to Results Radio/Townsquare Media, located at 5100 South Tennis Lane, in Sioux Falls, South Dakota; for generously posting about Dezzirae and the fundraising event which is being held at Overtime Sports Grill & Bar during the entire month of August, 2020.
We sincerely appreciate your willingness to help us spread the news by sharing information on all seven of your Sioux Falls, South Dakota and surrounding area radio stations websites.
August 10, 2020
Thank you to everyone who generously donated during the week of August 2nd through the 8th.
August 6, 2020
Thank you to Help Hope Live’s executive director, Kelly Green; for taking time out of your busy schedule so that you could speak on our behalf, during the interview that was conducted by Keloland news.
August 6, 2020
Thank you to Keloland Media Group, located at 501 South Phillips Avenue, in Sioux Falls, South Dakota; for generously conducting a news interview so that we could spread the word about Dezzirae, Giant Axonal Neuropathy (GAN), this fundraising campaign, and the event that is taking place at Overtime Sports Grill & Bar during the entire month of August, 2020.
Our family sincerely appreciates the fact that you allowed us some air time during your Health Beat segment on Keloland news.
August 6, 2020
Thank you to Midwest Communications Inc., located at 500 South Phillips Avenue, in Sioux Falls, South Dakota; for generously posting about Dezzirae and the fundraising event which is being held at Overtime Sports Grill & Bar during the entire month of August, 2020.
We sincerely appreciate your willingness to help us spread the news by sharing information on all six of your Sioux Falls, South Dakota radio stations websites.
August 3, 2020
Thank you to everyone who generously donated during the week of July 26th through August 1st.
July 29, 2020
Thank you to OverTime Sports Grill & Bar, located at 4529 East 26th Street, in Sioux Falls, South Dakota; for generously offering to host a Dine & Donate event during the entire month of August, 2020.
It is with the utmost sincerity that I say our family truly appreciates the fact that you are willing to help Dezzirae by donating 10% of the funds from every purchase made in her name.
July 27, 2020
Thank you to everyone who generously donated during the week of July 19th through the 25th.
Because of your support, our campaign is off to a great start.
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Guestbook
July 28, 2020
What a beautiful girl you are Dezzirae! What an amazing journey you traveled through so far, and you keep making it; God inside and all around you carrying you through. Many prayers for your beautiful spirit, and your loving family's as well. Heart hugs!
Amy Harless
Mail a Check
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Dezzirae Woods
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
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