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MALACHI IS ONE IN A MILLION

In More Ways Than One

Malachi is a shy, artsy five-year old who loves to draw, do puzzles and listen to music. When his older brother, Dakota, gets home from school, the two often head outside to get into some healthy mischief.

You would never know Malachi has a chronic condition, Cystinosis, that he shares with only about 500 other people. 

“Every cell in our body produces an amino acid by-product called cystine that gets washed out of the cell,” says Malachi’s mom, Jodi, “With Cystinosis, the cystine crystallizes and stays in the cells, preventing growth and causing organ damage.”

Jodi and her husband, Alan, noticed that at nine months Malachi was losing interest in food, drinking more water and avoiding putting weight on one leg. Their pediatrician recommended a GI doctor, who tried various treatments for three months, until finally admitting him to hospital, where he stayed for 10 days.

“That was a rough time” says Jodi, “It was a relief to have a diagnosis, but to learn that it was a genetic disorder with no cure, that he was coming home with a G-tube for nourishment and for delivering the 10 different medications that would save his life by helping his system flush out the cystine-it was a lot to process.”

At the hospital, Jodi was given information about Good Days, but initially put it aside as she coped with all she had to do.  Jodi firmly states, “I now thank the Lord that Good Days was there because I really don’t know how I would have done this without them.”

Malachi still has his feeding tube, but now it’s mostly for the medications needed as he’s eating enough to grow.  The plan is to remove the tube before he goes off to kindergarten. However, he still receives medication six times a day and his levels must be constantly checked to ensure that all his organs are washing away the amino acids.

Good Days not only helps with the cost of treatment, but facilitates and provides assistance for travel expenses.  The nephrologist who correctly diagnosed Malachi said the condition was so rare she’d only seen it in textbooks and recommended the family connect with National Institutes of Health (NIH). There, the monitoring of Malachi’s rare condition adds to the research everyone hopes will one day lead to a cure.

PARTNER PROFILE 

CYSTINOSIS RESEARCH NETWORK

Cystinosis is a rare genetic disorder that often comes with a heavy financial burden due to medication expenses, high insurance premiums, and associated travel costs. Good Days helps individuals to overcome the burden of these treatment costs and expertly navigates patients and their advocates to necessary resources thanks to our partnership with the Cystinosis Research Network (CRN). Our collaboration means that our patients and their advocates can receive holistic support to meet both physical and emotional needs.

Cystinosis is a metabolic disease that causes the amino acid cystine to accumulate in various organs of the body. Without specific treatment, children with cystinosis develop end stage kidney failure at approximately age nine. Thankfully, as treatments have improved, children can now live into adulthood and experience productive lives. CRN is a volunteer, non-profit organization that supports and advocates research, provides family assistance and educates the public and medical communities. Their vision is the acceleration of the discovery of a cure, development of improved treatments and enhancement of quality of life for those with cystinosis.

Through various support programs, CRN is actively involved in the cystinosis community. CRN offers robust online resources through their website (cystinosis.org), access to Vice President of Family Support Jen Wyman (jenwyman@cystinosis.org), discussion platforms on Facebook and Twitter, and inspirational and informative images on Instagram. Their YouTube channel is filled with relevant videos from cystinosis patients, caregivers and physicians alike. Their most recent support endeavor is a committee called Future by Design. Future by Design consists mostly of adults living with cystinosis who come together to create a brighter future, especially for teens and adults impacted by the disease. The Future by Design Outreach Program connects individuals and builds relationships that remind members they are not alone.  

For more information about the Cystinosis Research Network, visit cystinosis.org or connect with them on Facebook at facebook.com/CystinosisResearch/.  

MEET THE BOARD

Few people are more committed than Gary Barton when it comes to accountability, hard work and helping others. After a successful career in finance managing portfolios for some of the largest banks including Wells Fargo and Citigroup, the Texas native and his wife, Tina, went on to form and operate two franchises of the largest residential and commercial painting companies in North America. Gary and Tina have been married for 26 years and have two children, a daughter who is a senior at Baylor University on a pre-medical track, and a son who is in his first year at the U.S. Military Academy at West Point.  

“I am really big on delivering certainty and being a blessing to families,” says Gary. “I try to do this in all facets – whether it’s with a customer or a crew member, we try to keep our antennas up to see what we can do to make a difference. For example, we recently found out the ages of our employees’ children and provided backpacks and school supplies for them to help get ready for the new school year.”

In addition to his passion for helping families, Gary brings to Good Days an exceptional financial acumen and strategic perspective. With a Master’s in Business Administration, he graduated Summa Cum Laude from the University of Texas at Dallas.  

“At the heart of it, Good Days helps people in the midst of difficult situations,” says Gary. “We all have a responsibility to give back, and this is an opportunity to help those in need. We are supposed to take care of the elderly and of the sick, Good Days does exactly that.” 

CHRONIC DISEASE DAY 2018 RECAP

More than 20 state governors and dozens of mayors from big cities and small towns across the country joined Good Days to proclaim Tuesday, July 10, 2018 as Chronic Disease Day! 

Good Days provided free online resources this year at ChronicDiseaseDay.org to help everyone manage their individual mental, physical and emotional well-being. The free resources are still available online and include Self-Care Tips with suggestions to identify and cope with different forms of stress, improve exercise and diet, and find strength through personal support systems. 

“We’re honored by the outpouring of support from our community of patients and patient advocates across the country that helped make this the most widely-recognized Chronic Disease Day ever,” says Clorinda Walley, president of Good Days. “This is an opportunity to learn from each other and build support, as well as a call to action to take steps to prevent chronic disease whenever we can.”

Visit ChronicDiseaseDay.org to learn how to help us spread awareness in 2019. 

CHEERS TO AN AUTUMN OF GOOD DAYS

CLORINDA WALLEY

We’ve been especially busy these past few months here at Good Days. Since our last newsletter, we’ve taken steps to publicly advocate for access to care, recognized the biggest 
Chronic Disease Day yet, and prepared for our 10th annual signature event where we celebrate people helping people and raise awareness for individuals with chronic and life-altering illness.

Now that another Summer has passed, the days are shorter and the evenings cooler. Each changing season brings new opportunities to be grateful for our surroundings and to appreciate life. But changing seasons often bring new schedules and responsibilities too. 

For many Americans, the transition from Summer to Fall requires schedule changes and other adjustments. For those of us who must also cope with the added burden of chronic and life altering illness, various symptoms, conditions or flare-ups can make even basic tasks challenging or impossible without assistance. For many households, this time of year can be fraught with anxiety and stress. 

That is why we pride ourselves on the relationships we build and the people we serve. At Good Days, we know that compassion is one of the most important human traits we can offer one another. We also know from experience that a friendly voice can go a long way to provide hope. Remember to always put your health first and engage with loved ones so that you have a support team. Please know that Good Days is here to provide whatever support we can. We could all use an extra hand from time to time – financial or otherwise. 

Our supporters and partners make our charity the vital resource that it is today. Thanks to partners such as the Cystinosis Research Network, an organization you’ll read more about in this newsletter, we’re proud to offer our patients and their advocates holistic support to meet both physical and emotional needs. We’re pleased to also feature Malachi, whose strength and positive attitude help to inspire us. 

On behalf of the entire team at Good Days and all who we serve, thank you for your support.

Sincerely,

Clorinda Walley, President

Good Days