*LendAHandToSara

On March 6th, Sara had a significant follow-up with her cardiologist to assess the recovery of her heart. Unfortunately, despite her iron levels dropping significantly in the past two months and even being able to stop one of the iron chelators with higher risks, her recent echocardiogram still showed iron buildup in her heart muscle and no improvement in its function. It’s tough news to swallow — Sara remains in end-stage heart failure, and the transplant team is involved in her case. Unless her heart begins to improve on its own, a heart transplant will be inevitable. Needless to say, this wasn’t the update we were hoping for, and the news has weighed heavily on us all. We hold a hand out to Sara and Mitch, who have been incredibly resilient since her cardiac arrest and are facing an unpredictable road ahead. 

Amidst the challenges, there is some brightness. Sara’s stroke recovery is progressing remarkably well; she’s graduated to outpatient physical therapy and has regained much of the function in her left arm and leg. Day by day, she’s feeling more like herself again. 

The support from this fundraiser has been a lifeline for Sara and Mitch, covering ongoing medications, treatments, therapies, and appointments. Yet, with expenses piling up beyond what insurance covers, Sara and Mitch are financially strained. The ongoing support from the compassionate community that has cultivated here means the world to us, giving them the resources they need to face this journey with courage and hope. 

Hello everyone,

As we step into the new year, I wanted to provide an update on my sister Sara's medical journey and express our deepest gratitude for the support you've shown so far.

Sara has been home under 24-hour supervision and receiving attentive care from a dedicated home health team. It has been a blessing to have Sara home, especially for the holidays, and at the same time has introduced new challenges in Sara’s recovery as our family learns to navigate the home health and outpatient world instead of the inpatient experience. Your contributions have enabled us to provide the necessary medications, rehabilitation, therapies, and home nursing that are vital to her ongoing recovery. However, with the numerous ongoing medications and treatments, we're still facing a significant gap in funds needed to cover Sara’s medical expenses after what her insurance covers.

The current costs associated with Sara's treatment are exceeding their income, making the continued support from this fund crucial. Your generosity is directly helping Sara maintain the momentum of her recovery, and we can't thank you enough for that.

An encouraging development is that Sara's iron levels have decreased an incredible amount at this point, a testament to the effectiveness of her ongoing medication. However, the outcome of her heart failure remains undetermined until her iron levels are fully normalized, underscoring the critical importance of her continued treatment.

In the spirit of the new year, we're reaching out to ask for your help in spreading awareness about Sara's story. Every share and donation, whether big or small, has an incredible impact on our family's ability to navigate through this challenging time. Your support is a beacon of hope for Sara's recovery, and we appreciate each and every one of you who has joined us in this journey.

Thank you for your ongoing kindness, and may the new year bring healing, strength, and brighter days for Sara and our family.

News coverage update: 

Hello everyone! As Sara's story gains traction in the media, we wanted to provide some clarification on the financial challenges our family is facing for those who may not be familiar with us personally. Prior to her marriage, Sara did not have health insurance. It's important to note that the focus of this fundraiser is on the expenses incurred after securing coverage.

The extensive duration of Sara's stay in the ICU and hospital, the multitude of tests—both diagnostic and maintenance—and the cost of her treatment, exacerbated by the rarity of her condition, have led to astronomical medical bills and treatment, recovery, and rehabilitation expenses. Mitch and Sara, after what their health insurance will cover, are facing expenses that far surpass their means.

The situation is further complicated by Sara's inability to work throughout her recovery, our mom having taken time off from her job to assist with Sara's care, and Mitch having to take time off work for appointments and care; intensifying the financial burden on our family. Your support is crucial during this challenging time, and any contribution to the fundraiser—if you are financially able—will go a long way in alleviating the overwhelming medical expenses, rehabilitation costs, and the financial impact of Sara's inability to work. Thank you for your understanding and generosity.

To everyone who has played a part in supporting Sara’s recovery—whether by sharing her story, contributing to her medical bills, or offering assistance in any form—our gratitude is endless. We are happy to share the news that Sara has been discharged from OHSU and is now back home. Her continued care will involve close monitoring by numerous outpatient providers and a dedicated home health team, as well as assistance from Mitch, our mom, and I (Jane, Sara’s sister) in daily life.

Given the uncertainties surrounding Sara’s condition and recovery during her ICU admission, her return home is nothing short of remarkable. Looking ahead, the unique nature of Sara’s diagnosis and the rarity of cases like hers pose challenges in predicting her recovery path. Juvenile hemochromatosis, with fewer than 200 cases identified worldwide, presents a complex scenario, particularly since early diagnosis before significant organ damage is rare. The discovery of Sara’s genetic condition is both inconceivable and heart-wrenching. While Sara’s discharge brings relief and a sense of the extraordinary, it also comes with substantial bills for her hospital stay, emergency services, and medical expenses. This unexpected financial burden weighs heavily on this young couple and our family.

We are incredibly thankful to Jashayla Pettigrew at KOIN 6 for reaching out to write an article on Sara’s story, helping this fundraiser reach a wider audience. https://www.koin.com/local/clackamas-county/oregon-newlywed-goes-into-cardiac-arrest-day-after-wedding-learns-of-rare-condition/

If you are in a position to do so, your donations are immensely appreciated and will directly contribute to easing the significant medical financial strain Sara and Mitch are under. By sharing Sara’s story, together, we can make an impact on their journey to financial recovery. Thank you for your continued support and generosity.

To those who are interested, we also want to spread awareness about sudden cardiac arrest and Sara’s condition.

The Sudden Cardiac Arrest Foundation is a great source of information and helps raise awareness and promote research into cardiac arrest. There are over 356,000 out-of-hospital cardiac arrests in the US annually, most people having no symptoms before their arrest, such as Sara. The survival rate of cardiac arrest is only slightly higher than 10%, highlighting the importance of further research into management and treatment. Sara was fortunate to have Mitch with her who is CPR trained and was able to start life-saving measures immediately, greatly increasing her chances of survival. https://www.sca-aware.org/about-sudden-cardiac-arrest/latest-statistics

Information on juvenile hemochromatosis can be found here https://rarediseases.org/rare-diseases/juvenile-hemochromatosis/ and/or here
https://www.ncbi.nlm.nih.gov/books/NBK1170/