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Diane and Jake Pickles, Massachusetts

 

Diane Pickles and Jake Pickles live in Haverhill with husband/dad Bill and older brother Matt. Jake was diagnosed in utero with Hypoplastic Left Heart Syndrome which means that the left side of his heart failed to develop and he is missing a left ventricle – the body’s main pump. Jake's doctors gave him very low odds to survive even the first of what would be at least 3 open heart surgeries. Jake has not only survived but has thrived! Jake has had 3 open surgeries, the first at 3 days old, the second at 6 months, and the third at the age of 2. In addition, he has undergone several cardiac catheterizations, many inpatient and outpatient tests and procedures, inpatient admissions for asthma and respiratory distress, chronic infections, and more trips to doctors and to the emergency room than the family can count. While there is no long-term prognosis for Jake, the family knows they have been incredibly blessed as Jake has exceeded all expectations. When Jake was diagnosed in utero at 26 weeks, Diane and her husband had an 80/20 PPO plan with a lifetime per person maximum of $1 million. What once seemed an unbelievably high limit became a frightening, looming number when they faced several open heart surgeries and cardiac ICU charges. On top of the stress of Jake's life-threatening medical condition, Diane and Bill had to worry about and struggle with insurance and finances every day. At the age of 4, Jake’s healthcare costs already totaled $500,000. When given the opportunity to enroll in a new insurance plan with no lifetime cap, they jumped at the opportunity. Diane has been a strong advocate for affordable quality access to health care because she always feared that families would put off tests and life-saving procedures, rationing needed medications, and wait to act on new or worsening symptoms because they are trying to cut medical costs and that kids like Jake would end up uninsured.

Diane continues to fight for access to quality care and this year has been a tireless advocate in ensuring that all newborns are tested with pulse ox for congenital heart defects before they leave the hospital. Thanks to Diane's dedicated advocacy we have had victory and the bill is awaiting the Governor's signature.

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