A Transplant Family is Celebrating Their Son’s New Kidney and His Second Chance at Life
Mom was his Living Donor … Making the Anniversary Extra Special
September 3, 2019 -- September is going to be a month of celebration and joy for COTA’s Luhm Family of Little Elm, Texas. On September 26th the entire family, and lots of folks in their community, will be celebrating the two-year anniversary of Wiley receiving a life-saving kidney from his mom, Stephanie. This is a celebration that Stephanie and Wiley’s dad, Mike, only dreamed about just a little over two years ago. It has been a long journey for the Luhm Family, but one that seems to now be on the right track.
In June 2014, after 10 years of marriage and after a healthy and routine pregnancy, Stephanie and Mike were ecstatic to meet their baby boy who they had already named Wiley. But once Wiley was born he was immediately rushed to the NICU due to breathing difficulties. Oxygen helped the newborn, but it was clear something was very wrong. When Wiley was two days old he was transferred to Medical City Children's Hospital in Dallas where Mike and Stephanie heard the crippling news -- their precious baby boy was in End Stage Renal Disease (ESRD). In Wiley’s case, the ESRD was caused by a birth defect known as posterior urethral valve (PUV). PUV, which appears in 1 in 5,000 to 8,000 baby boys, is a condition in which an extra flap of tissue grows inside the urethra blocking the flow from the bladder, which prevents urination. Baby Wiley’s inability to urinate in utero severely damaged his developing kidneys.
When Wiley was only three days old he underwent his first surgery to have a peritoneal catheter inserted. Later that day, the three-day-old baby was placed on his first round of dialysis. For the next five weeks, he endured three more surgeries and nightly dialysis. On August 1st, Baby Wiley was released to go home with Mike and Stephanie for the very first time. Throughout his first months at home, Wiley had to undergo many lab draws and be taken to numerous doctors’ appointments.
The Luhms were very aware that ultimately Wiley needed a new kidney for long-term survival. While they waited for the baby to grow and gain weight, Stephanie and Mike became quite proficient at nightly dialysis, daily weigh-ins, vital checks and getting an infant to take a host of medications. This was their life throughout the fall of 2014. In January 2015, Stephanie found the name of the Children’s Organ Transplant Association on another kidney mom’s Facebook page and started doing online research. In early February, Stephanie called COTA to learn more and to ask many good questions about how COTA might be able to help. In late May, Stephanie and Mike returned the paperwork and officially became part of the COTA Family.
COTA uniquely understands that parents who care for a child or young adult before, during and after a life-saving transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a community team of trained volunteers. Another plus? COTA funds are available for a lifetime of transplant-related expenses. In late July 2015, a COTA fundraising specialist trained volunteers in the Dallas and Memphis (TN) areas for the COTA campaign in honor of Wiley L and walked the volunteers through the entire COTA fundraising process.
According to Stephanie, “COTA was there for us from the very beginning once we decided we needed their support and guidance. We were contacted immediately by COTA representatives who were eager to help us on our journey. Their encouragement, expertise and ideas for fundraising helped our COTA volunteers get the ball rolling. We could contact COTA at any time if we had any questions. COTA representatives were (and are) always readily available and always have the necessary answers to our questions.”
In January 2017 Wiley finally reached the required weight and was referred to the transplant team to begin the workup process. Stephanie remembers, “When we started the transplant workup process we had many meetings and appointments. One of the meetings was with a transplant financial coordinator who specifically asked us if we had the financial means to follow through with the transplant and all the long-term medical expenses. When we explained that our friends and family members were already raising funds for COTA in honor of Wiley, she immediately stated, ‘That is perfect.’ Our transplant financial coordinator described COTA as a wonderful organization and told us we were most definitely doing the right thing by working with the team at COTA.”
It was at that moment Stephanie and Mike knew COTA truly was recognized as the trusted leader supporting families throughout the transplant community. The COTA in honor of Wiley L team of volunteers worked steadily to plan events and promote online fundraising using a free website COTA provided. Over the course of a year, these COTA volunteers raised more than $100,000 for a lifetime of transplant-related expenses.
In early May 2017 Wiley was approved as a kidney transplant recipient and was placed on the United Network for Organ Sharing (UNOS) waiting list. It was also at this time that any potential living donors could begin to be tested. The day Stephanie and Mike were told their tiny baby boy would one day need a kidney transplant, Stephanie knew she would do anything to be his living donor. She had a sense that one of her kidneys would be the best kidney for him. Without hesitation Stephanie started the living donor workup. After months of testing and a lot of waiting, Wiley’s mom was approved to be his kidney donor.
“When we first started the workup process for a potential donor, at no point did we worry about the financial burden that two patients would have on our family – thanks to COTA. We went full steam ahead knowing that I could provide him with a perfect kidney, and COTA funds would be available for mounting transplant-related expenses. Mike only had to worry about taking care of his two loved ones instead of worrying about how the bills were going to get paid,” Stephanie said.
After being on dialysis for 1,179 days, Wiley received his Mom’s kidney … and his second chance life … on September 26, 2017. It was a dream come true for Mike and Stephanie. For months they had dreamed about Wiley’s new life -- going to bed without being hooked up to a machine, taking a regular bath like other toddlers, being able to go swimming like the other kids in the neighborhood and simply feeling better and having more energy.
The transplant was a success. Stephanie was released from the hospital three days after the transplant and Wiley was released to home two weeks later. On October 9, 2017, the Luhms were together at home with no dialysis, no tubes, no machines; they were for the first time simply a normal family.
According to Stephanie, “COTA made fundraising easy. The support we received through COTA fundraisers gave us so much motivation and let us know we were not alone on this journey. Contributions were even received from people we did not know who had found out about Wiley’s story through COTA.”
There is no cure for kidney disease. Wiley will probably need multiple transplants and will be on numerous medications for the rest of his life. That fact adds a layer of anxiety for many COTA parents. For Stephanie and Mike it also brings fear-filled questions to mind: What will happen to our son when we are no longer around? Will he be able to get a job or have insurance with this medical condition? How will he ever afford his own medical bills? These are terrifying questions, but according to Stephanie, knowing COTA funds are available for a lifetime puts those fears to rest.
“The Children’s Organ Transplant Association gave us hope and provided the support our team of volunteers needed to successfully raise funds for transplant-related expenses. COTA also gave us a sense of peace because we have not had to worry about the financial struggles that are typically part of a family’s transplant journey. Having COTA by our side has allowed us to focus on Wiley’s health and to seek the best medical care possible … for a lifetime.”
Wiley has been doing fantastic after his transplant, but in December 2018 he became sick with his first major illness post transplant. Because of the immunosuppressant drugs he has to take to keep his kidney healthy, his body cannot easily fight the simplest of illnesses. Wiley contracted a virus that normally runs its course within 24 hours; however, it had a major effect on Wiley and his body could not fight it. It put him in the hospital for five days in December and then again for 20 days in January 2019. He was in the hospital longer for this stomach bug than for the kidney transplant. But again COTA was there for this family.
According to Stephanie, “Once again we only had to worry about his medical needs and not about the bills associated with a 25-day hospital stay. Wiley’s transplant journey did not end once he received his new kidney, and this is something we finally had to face. But that is why we have placed our unwavering trust in COTA … a safety net that will be there for a lifetime.”
Since the early 2019 ‘hiccup,’ Wiley has done great. He regained his strength and had an amazing spring and summer. Wiley has become quite a swimmer and his getting ready to attend Pre-K full time. The Luhms feel so blessed to see how much he has grown and developed.
It makes Stephanie and Mike smile to know Wiley’s life is now definitely on the right track!
For more information about the Children’s Organ Transplant Association (COTA),
or to find a COTA family in your area, please email kim@cota.org
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VOID OF VISION
UNLEASH NEW SINGLE
NEW ALBUM HYPERDAZE
OUT SEPTEMBER 13th, 2019
SEPTEMBER 3, 2019 - Ahead of the release of their sophomore album Hyperdaze next week, Void Of Vision are offering another taste with the bleak and blistering single "Babylon." Soaking in lines such as "there is no God, we were born to rot and we all die the fucking same," "Babylon" is the ultimate parcel of rancour.
On "Babylon," Void Of Vision lead vocalist Jack Bergin explains that the track is a purposeful and direct anarchist anthem, his own "dark twisted little fantasy."
"'Babylon' is my outlook on the world that I live in. I see day in and day out the integrity of the human race decline further and further through ignorance and injustice," he explains. "At the end of it all, I can't help but feel a sense of impending doom for humanity if it continues on like it is, the end most likely bought upon us by our own blatant disregard for one another."
"It's a bleak and defeated mentality but I really just wanted to express my current frame of mind to accompany the rest of those dark thoughts amongst Hyperdaze."
Atop the album's release next week, Void Of Vision will take to Heaven And Hell Festival alongside the likes of The Amity Affliction, Crossfaith, Underoath, Make Them Suffer, and Trophy Eyes, and support Northlane across Australia, Europe and the UK. More details below.
Hyperdaze, Void of Vision's forthcoming sophomore album, will be available on Friday, September 13th, 2019 via UNFD. Fans can pre-save the album now, here: https://unfd.lnk.to/PresaveHyperdaze.
Follow Void of Vision:
HYPERDAZE TRACK LISTING
1. Overture
2. Year Of The Rat
3. Babylon
4. If Only
5. Slave To The Name
6. Adrenaline
7. Hole In Me
8. Kerosene Dream
9. Decay
10. Splinter
11. Hyperdaze
Void of Vision Upcoming Tour Dates:
September 14 - Riverstage, Brisbane AUS @ Heaven and Hell Festival
w/ Northlane:
October 11 - UNSW Roadhouse, Sydney AUS
October 12 - The Triffid, Brisbane AUS (SOLD OUT)
October 17 - 170 Russell, Melbourne AUS
October 18 - 170 Russell, Melbourne AUs (SOLD OUT)
October 19 - Lion Arts Factory, Adelaide AUS (SOLD OUT)
November 22 - Germany Karlsruhe @ Weiße Rose
November 23 - France Paris @ Le Gibus
November 24 - Belgium Antwerp @ Zappa
November 26 - UK Leeds @ Stylus
November 27 - UK Manchester @ Academy 2
November 28 - UK Southampton @ Engine Rooms
November 29 - UK Glasgow @ Garage
November 30 - UK Birmingham @ o2 Academy 2
December 1 - UK London @ Electric Brixton
December 3 - Netherlands Haarlem @ Patronaat
December 4 - Denmark Copenhagen @ Hotel Cecil
December 5 - Sweden Eskilstuna @ Lokomotivet
December 7 - Finland Helsinki @ On the Rocks
December 9 - Sweden Gothenburg @ Trädgårn
December 10 - Germany Hamburg @ Markthalle
December 11 - Germany Berlin @ SO36
December 12 - Poland Warsaw @ Proxima
December 13 - Germany Leipzig @ Conne Island
December 14 - Czech Rep Prague @ Palac Akropolis
December 15 - Austria Wien @ Flex
December 17 - Germany München @ Backstage
December 18 - Switzerland Aarau @ Kiff
December 19 - Luxemburg Luxemburg @ den Atelier
December 20 - Germany Köln @ Essigfabrik
December 21 - Germany Wiesbaden @ Schlachthof
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REVEALED: Is The World Addicted To Being Online? New Study Reveals Countries Most Addicted to Their Screens
17 July: New research by BusinessFibre.co.uk reveals the countries who spend the most time on their screens, along with insights into which gender and age groups tend to spend more time online. To take a look at the research, click here.
Who Spends More Time Online?
The Philippines has been named as the country who use the internet the most, with people spending an average of 10 hours a day online - the highest amount of time across all countries measured. The country spent nearly five hours a day on mobile interest, whilst spending just over five hours on desktops, laptops or tablets.
Brazil, Colombia, and Thailand all followed closely behind the Southeast Asian country, with all of them spending more than 9 hours a day on the internet.
Japan spent the least amount of time online globally, with the average only being 3 hours and 45 minutes per day - they were also found to have the lowest amount of time spent across mobile and desktop, despite 94% of the population having access to the internet.
Solely looking at the amount of time spent online, the worldwide average is 6 hours and 42 minutes, but 17 countries surpassed this, and when measuring all metrics, 34 countries were above the worldwide average.
The UK spent up to 5 hours and 46 minutes a day on the internet, whilst the USA spent slightly more time online, around 6 hours and 31 minutes per day. When measured across all metrics, the UK came 22nd place in the internet index whilst the USA came 12th.
The UAE has the highest amount of people using the internet overall, with 99% of people in the UAE having access, in comparison, the world average was around 57% (which was also shared by China). Despite having the second-largest population in the world, only 41% of people use the internet.
Age and Gender
With younger generations more likely to use modern technology and older generations having to adapt, we take a look at which age groups are more likely to use the internet in both the UK and USA.
99.4% of the UK’s 25-34-year-olds use the internet, making it the age group that uses it the most. This was closely followed by 16-24-year-olds, with 99.2%. Interestingly, 83.2% of 65-74-year-olds in the UK use the internet, but this dramatically declines for the 75+ with only 46.8% of them going online.
Across the pond, 100% of American 18-29-year-olds use the internet, with this just dropping to 73% for 65+-year-olds.
The research from the UK and USA also revealed there was little difference between the genders when it came to internet usage. In the UK, 92% of men used the internet compared to 89.6% of women, whilst in the USA, 89% of men used the internet and 88% of women did.
Children and Workers in the UK
Engineers spent more time on their screens compared to IT Specialists by just 10 more minutes each day, research revealed. It was found employees in these professions could spend more than 18 hours a day on their screens across work, commuting and home.
Accountants were found to spend more than 13 hours a day, whilst teachers could spend up to nearly 12 and a half hours at a time.
Increasingly a number of parents are becoming worried about the amount of time their children are spending online. In efforts to pacify children or aid learning, tablets are often used but there is a lot of discussion around the safety of children online and whether it can affect their overall development.
In the UK it was found that 3-4-year-olds could spend up to 8 hours a day with 53% of them being online, whilst 5-7-year-olds spend up to 9 hours a day and 79% of them using the internet.
Tips for Reducing Screen Time
Ian Wright of BusinessFibre.co.uk stated:
“In a world where we can access unlimited amounts of information in just a few clicks has revolutionised our lives. Not only has the internet and computer technology changed the way we work, our levels of productivity and how we see the world - it has also changed the way we communicate with people. This research gives an insight into countries that rely on the internet heavily, and whether there’s a limit of when you can or cannot be addicted to the internet.”
Screen Time
To see which countries are spending the most or least amount online, or to view the list in more detail you can take a look at BusinessFibre.co.uk’s new tool here.
