Kalamazoo Family Joins Kidney Walk to Support Son with Alport Syndrome

Each year, the National Kidney Foundation (NKF) holds a Kidney Walk to help provide support and assistance to those with chronic kidney disease (CKD) and other kidney-related conditions. Due to COVID-19, the Kidney Walk looked a little different this year, a blend of virtual and in-person. However, this did not stop the event, which took place at the Detroit Zoo on August 15, 2021. According to WBCK 95.3, the Kidney Walk also allowed one family from Kalamazoo to show support for their son, Liam, and raise awareness about his condition: Alport syndrome. 

Kidney Walk

So what is the importance of the Kidney Walk? According to the NKF, Kidney Walks are:

A vital source of support as we provide real-time assistance for those in need, [including ensuring] that 37 million Americans living with chronic kidney disease get diagnosed, treated and supported early; [providing] the public, patients, and healthcare professionals with tools to promote kidney health; [and advocating] for change on Capitol Hill.

This year, the Kidney Walk at the Detroit Zoo aimed to raise $325,000. As of the time of this article, the walk has so far raised $130,187.77. Interested in donating? You can make a donation to the NKF here.

Liam’s Story

One family drove all the way from Kalamazoo to participate in the Kidney Walk and raise awareness for Alport Syndrome, a rare genetic disease characterized by progressively worsening kidney function. 

When Farrah and David were first starting a family, they had no idea what the coming years would bring. Farrah’s family had a history of Alport syndrome. Sadly, she had even lost her father to the disease when she was just 29 years old. So it was a bit shocking to discover, when their son Liam was tested at just 1 month old, that he also had Alport syndrome.

Now, at 2 years old, Liam’s family considers him to be a warrior. In fact, the t-shirts that the family wore during the walk were emblazoned with “Warrior Liam” and “Alport Syndrome – Not for the Weak.” 

Currently, Liam lost hearing in one of his ears. While the family isn’t sure what the coming years will look like, they will tirelessly work to raise awareness, fight for their son, and support future Alport syndrome research. 

Alport Syndrome

COL4A3, COL4A4, and COL4A5 gene mutations cause Alport syndrome, a rare disease which causes the progressive loss of kidney function. Normally, these genes encode for type IV collagen, which plays a role in helping glomeruli remove water and waste from the blood. However, gene mutations prevent glomeruli from removing this waste, causing kidney scarring and, ultimately kidney failure. Those with Alport syndrome may also experience hearing or vision abnormalities, as type IV collagen also plays a role in inner ear and eye structures. Typically, male patients with Alport syndrome are more likely to be symptomatic than female patients. 

Symptoms include:

  • Bloody urine
  • Proteinuria (excess protein in the urine)
  • Swelling of the lower extremities
  • High blood pressure
  • Retinal discoloration
  • Excessive thirst
  • Frequent urination
  • Misshapen lenses
  • Hearing loss

Learn more about Alport syndrome.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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