Dearest friends and family- we need help supporting Natalie with the road ahead as she faces significant medical and financial challenges.

Many of you close to Natalie may be familiar with her health challenges over the years. It has been decades of seemingly unexplainable and separate issues from lower back pain at a very young age, seizures, migraines, digestive issues, joint pain and more.

After years of bouncing from Mayo clinic to specialist after specialist in the states, we recognized that no one had the specialization to address all that Natalie was confronting. We are currently in Barcelona, Spain at the Clinica de Dr Gilete, a renowned neurosurgeon (and the only?!?) specialist with a center for complex spine issues that addresses all of the complicated, interconnected conditions. We have just found out that what we had imagined as the worst outcome is in fact what we are facing. A skull to spine fusion surgery to address her Craniocervical Instability (CCI) and possibly a tethered cord surgery as well.

If you know Natalie, you know that her background in science, neuropsychology and general curiosity have served her well on this journey as she has (sadly) had to be her own biggest advocate. From the start of her seizures back in 2013, when she was told after many consultations with neurologists that she should see a therapist “it was all in her head” to her many, many other complications that have led her to look into Hypermobile Ehlers Dahnlos Syndrome (hEDS). hEDS is a rare genetic condition she was eventually diagnosed with after navigating her way to a doctor in MN who also had the disease, evaluated her and quickly confirmed she indeed had it. This was only the start of a years-long process to try to get to the bottom of her long list of hEDS comorbidities that are now causing her to be unable to write, type, wash her hair, walk her dog and even stand for short periods of time.

I understand that all of this may come as a surprise to even some of her closest friends, as her sister I wasn't aware of how bad it had become until 6 months ago. She has braved this all with hope, strength, humor, a loving supportive partner in Ike and a ton of grit. She doesn't like to complain or ask for help. It is a lot to explain, as it is very complex and not widely understood. As we are here together in Barcelona, I have told her it is time to let this go, focus on what she needs to be able to live a full life again, to heal, and to lean on the community she has built- those that know her to be kind, funny, generous, wise and compassionate.

I will keep updating here- as we know more, but she expects to have surgery Nov. 14 and spend another month here recovering. Surgery alone will be 75k and it is likely she will need more down the road. None of this is covered by insurance and these procedures are not available in the states. Insurance has told us we can try to be reimbursed for some surgical costs, but even with insurance she will still spend $45k - $60k out of pocket and is facing the cost of her rehabilitation and travel costs as well.

We have gotten many texts and calls wishing her well, we deeply appreciate the support. She is in a lot of pain and processing these next steps so please know it means a lot to her even if she isn't responding. I will update you all as much as I can in the coming days. She will stay here until surgery and Ike is here with her now, my mom will be coming later this month as well and they will need your continued love and support especially when she returns home. We will keep you all posted on other ways to help like meals and social visits when she is recovering.

Despite it all- we feel so lucky to now be in the care of a truly remarkable Dr. Gilete who is showing her more care, understanding, respect and compassion than we could have ever imagined. We are relieved to finally have some answers and feel certain about the path forward although there are still unknowns. We are grateful for the love and support you all have shown and will continue to provide in the challenging year ahead.

Besitos y mucho amor de Barcelona xx

Natalie, Rachael and Ike