Support for the Soares Family

This incredible (and deeply humble) family could really use our support! As many might know, three of them suffer from a rare nerve condition called small fiber neuropathy that currently has no cure. For those close, you probably watched Sebastian's brave journey that started in elementary school, which ultimately helped pave the way for other kids with this globally. Sadly, both Oliver and Luna have been confirmed with the same gene mutation as Sarah and Sebastian. Having this condition comes with a lot of challenges, which prevents them from living as kids their age normally would. They don't have typical school days, attend social activities, or participate in youth sports. It can be intensely lonely and challenging for all of them. As a parent, all you really hope for is happy and healthy kids.

They do have the benefit of partnering with the doctor world-renowned for research on this disease, and they are very grateful to be in close proximity to her resident hospital in our backyard, Mass General in Boston. What everyone doesn't see is the impact this ongoing situation has on the whole family and the financial burden it fosters. When one of them gets sick, their symptoms are exacerbated because of their underlying condition. This year, Luna was hospitalized most of the summer, and now Oliver has been in-patient since mid-February. They can't seem to shake the Flu A from their house, which has been particularly harsh in New England this year. They are now dealing with secondary infections on top of their regular nerve pain. Given that there is no cure, the focus is on comfort and treating their symptoms. The types of meds used are experimental in a sense for kids as young as Luna and Oliver. Any adjustments and new tries need to be done under the care of a team to balance the potential side effects many can present. It is a very complicated disease and honestly heartbreaking to have a front-row seat to.

As someone very close to all of them, I am continuously impressed in their ability to find humor and love even in their darkest days. I do believe brighter hours are ahead, and I keep the faith Oliver will start to improve very soon. But I also know this wonderful family could really use a boost from their village. This situation has been all-consuming for so very long. Anything you can give will help them balance hospital parking and commuting expenses, prescriptions, and the stack of medical bills piling up. Sarah & Jose have been switching off staying with Oliver in order to to balance it all. This also means Jose's work has been impacted on top of such already trying days.

Oliver aspires to see the NYC skyline at night when he is healthy enough to. I would love to help them achieve this!

Thank you in advance for considering opening your hearts (and wallets).