Wheylen & Chelsea’s bout with Myotonic Dystrophy
Donation protected
After years of unsuccessfully trying to conceive naturally, Chelsea and Will spent their life savings and borrowed money from their parents to go through IVF treatment. As an extension of the treatment, they opted to purchase more in depth genetic testing. In May 2018, Chelsea and Will were beyond ecstatic and shared their exciting news with friends and family... they were pregnant! What they had hoped for and dreamed about for years was finally happening and they couldn’t wait to welcome their sweet baby into the world. Although doctors couldn’t find anything out of the ordinary during her entire pregnancy, they decided to induce Chelsea at 37 weeks when she started to experience a sudden and drastic increase of amniotic fluid. On January 30th, 2019 Wheylen was born via emergency c-section and was immediately put on full life support. Chelsea wouldn’t even be able to hold Wheylen for the first 48 hours of his life, as doctors frantically tried to stabilize him.
Unable to breathe, swallow, or eat on his own, Wheylen was quickly transferred to Randall Children’s Hospital. After 2 ½ agonizing weeks in the NICU, the doctor’s confirmed everyone’s greatest fears. Wheylen had been born with Congenital Myotonic Dystrophy - an extremely rare form of Muscular Dystrophy that is characterized by progressive muscle degeneration and numerous complications that impact all systems of the body.
Undiagnosed, Chelsea had carried Myotonic Dystrophy her whole adult life and had unknowingly passed this down to Wheylen. Throughout Chelsea’s adult life, she began to display every symptom of Classic Myotonic Dystrophy. Unfortunately, no medical professional ever pieced together her symptoms or insisted on further medical questioning to determine a diagnosis - including the fertility clinic during her year long fertility treatment. In all cases, whether the symptoms appear at birth or as an adult, this disease is chronic, progressive, and fatal. There is no cure at this time and the only treatment is the management of its symptoms as the disease progresses. The list of symptoms associated with this diagnosis is extensive, as it eventually affects every system in the body. The doctors have given Chelsea, who is 35 today, an average life expectancy of 43-55 years. Babies born with Wheylen’s condition, rarely live to see their 20th birthday.
What will the money be used for?
Income replacement - As Wheylen’s full time caregiver, Chelsea has been forced to leave her job as a social worker and will likely never return to the workforce. This was a job they relied on both financially and for their medical insurance.
Medical bills - Wheylen spent the first 3 months of his life in the NICU where he quickly racked up over $1,000,000 in medical bills. At nine weeks old, he had his first surgery to place a gastric tube which is now used daily to help him eat.
Doctor appointments - These have become an everyday occurrence for Chelsea and Wheylen and will continue for the rest of their lives as they manage their symptoms. The extra costs in gas required to drive to and from appointments throughout Oregon and Washington has taken an unexpected hit to Chelsea and Will financially. Appointments include physical, occupational, cognitive, speech, and vision therapies, etc.
Medical devices and supplies - As the disease progresses for both Wheylen and Chelsea, feeding tubes, ventilators, wheelchairs, wheelchair ramps, crutches, leg braces, helmets, glasses, etc. are all likely additions to their lives. No medical professional can confirm whether or not Wheylen will ever be able to walk or talk without extensive medical assistance or eat without a feeding tube.
By opting to pay for the additional genetic testing, Chelsea and Will believed that the fertility clinic would be screening for all genetic defects, mutations, and illnesses. Although they screened for many genetic abnormalities, Congenital Myotonic Dystrophy was not one of them. Instead of taking their baby home from the hospital a few days after birth as they had expected they would do, Chelsea, Will, and Wheylen lived at Randall Children’s Hospital for 3 long months. Now at home, they are trying to navigate a very uncertain future. These diagnoses have understandably taken a drastic toll on Chelsea and Will’s lives both financially and emotionally.
All financial contributions made will help to alleviate some of the stress so that Chelsea and Will can focus on providing the best possible outcome for their family as they manage the various life altering symptoms and everyday struggles that this degenerative and terminal disease creates.
Unable to breathe, swallow, or eat on his own, Wheylen was quickly transferred to Randall Children’s Hospital. After 2 ½ agonizing weeks in the NICU, the doctor’s confirmed everyone’s greatest fears. Wheylen had been born with Congenital Myotonic Dystrophy - an extremely rare form of Muscular Dystrophy that is characterized by progressive muscle degeneration and numerous complications that impact all systems of the body.
Undiagnosed, Chelsea had carried Myotonic Dystrophy her whole adult life and had unknowingly passed this down to Wheylen. Throughout Chelsea’s adult life, she began to display every symptom of Classic Myotonic Dystrophy. Unfortunately, no medical professional ever pieced together her symptoms or insisted on further medical questioning to determine a diagnosis - including the fertility clinic during her year long fertility treatment. In all cases, whether the symptoms appear at birth or as an adult, this disease is chronic, progressive, and fatal. There is no cure at this time and the only treatment is the management of its symptoms as the disease progresses. The list of symptoms associated with this diagnosis is extensive, as it eventually affects every system in the body. The doctors have given Chelsea, who is 35 today, an average life expectancy of 43-55 years. Babies born with Wheylen’s condition, rarely live to see their 20th birthday.
What will the money be used for?
Income replacement - As Wheylen’s full time caregiver, Chelsea has been forced to leave her job as a social worker and will likely never return to the workforce. This was a job they relied on both financially and for their medical insurance.
Medical bills - Wheylen spent the first 3 months of his life in the NICU where he quickly racked up over $1,000,000 in medical bills. At nine weeks old, he had his first surgery to place a gastric tube which is now used daily to help him eat.
Doctor appointments - These have become an everyday occurrence for Chelsea and Wheylen and will continue for the rest of their lives as they manage their symptoms. The extra costs in gas required to drive to and from appointments throughout Oregon and Washington has taken an unexpected hit to Chelsea and Will financially. Appointments include physical, occupational, cognitive, speech, and vision therapies, etc.
Medical devices and supplies - As the disease progresses for both Wheylen and Chelsea, feeding tubes, ventilators, wheelchairs, wheelchair ramps, crutches, leg braces, helmets, glasses, etc. are all likely additions to their lives. No medical professional can confirm whether or not Wheylen will ever be able to walk or talk without extensive medical assistance or eat without a feeding tube.
By opting to pay for the additional genetic testing, Chelsea and Will believed that the fertility clinic would be screening for all genetic defects, mutations, and illnesses. Although they screened for many genetic abnormalities, Congenital Myotonic Dystrophy was not one of them. Instead of taking their baby home from the hospital a few days after birth as they had expected they would do, Chelsea, Will, and Wheylen lived at Randall Children’s Hospital for 3 long months. Now at home, they are trying to navigate a very uncertain future. These diagnoses have understandably taken a drastic toll on Chelsea and Will’s lives both financially and emotionally.
All financial contributions made will help to alleviate some of the stress so that Chelsea and Will can focus on providing the best possible outcome for their family as they manage the various life altering symptoms and everyday struggles that this degenerative and terminal disease creates.
Organizer and beneficiary
Chris Ocell
Organizer
Vancouver, WA
Chelsea Phillips
Beneficiary