Thursday, July 30, 2015

Knowing when to ask for help.

Since Sam was born, one of the hardest things has been knowing when to ask for help.

So many people have helped so much over the years, to the point where we hate to ask anymore. But a wise person once told me "If you don't ask for help, people won't know that you need it".  But we still hesitate to ask because we feel guilty, especially when we know that some of the people who end up donating have similar struggles to us.

We haven't done any fundraising for Sam in quite awhile.  We have been very fortunate.  There are few true medical bills for Sam that aren't covered by his primary or secondary insurance.  As the years have gone on our financial situation has improved to the point that we have absorbed more and more of the cost for Sam to travel to Boston every other month, but it hasn't been easy.

Money that has been raised over the years for Sam has been spent wisely as well.  We sometimes fly inconvenient schedules out of inconvenient airports to save money. We do everything we can, in fact, to stretch out those donations any way we can.

Unfortunately, as time has gone on, the cost for our travel has increased and we are at a point where if we don't ask for help, we are going to struggle.

We don't, however, want anyone to get the wrong impression.  We own a modest home, we drive reliable vehicles, we take our family camping, our pantry and refrigerator are stocked (when we have time), once in awhile we splurge and buy something nice for ourselves.  We do spend our money on our family to enjoy life, but we spend carefully.

With all of that being said, we are starting a fundraising drive to help cover travel expenses.  Our goal is to raise $8000 through crowdfunding, similar to what we did in 2012.

This means we need your help.  Crowdfunding works by sharing our story and fundraising site, the more people we reach, the better our results can be.  We don't need everyone we know to donate money, just help spread the crowdfunding site.  There is a link to the fundraising site here:

 Please visit the fundraising site and share it, and keep sharing it!

Thank you to everyone who has helped keep Sam healthy over the years.  We appreciate the support you have given and continue to give!!

Frequently asked questions when we fund raise

  • Have you looked into charitable flights for your travel to Boston?
    • Yes.  We have chosen to fly commercially for a few reasons.
      • We have an awesome support structure in place that has allowed us to fly commercially.
      • Flying commercially has allowed us to make these trips to Boston and back all on the same day as our appointments.  This means that we only have to use a handful of vacation days each year for these medical trips, allowing us to use vacation time to spend time together as a family.
      • Some of these organizations have income requirements that we exceed.
      • There are people out there who desperately need those charitable flights.  Whether due to an emergency or a lack of support, we are happy to leave these resources available for them to use.
  • Can I donate airline miles?
    • We have looked into this in the past.  For some airlines it costs more than it's worth to gift or transfer miles.
    • Currently, we are only flying with Southwest Airlines.  This is the only airline currently running direct flights from Milwaukee, WI to Boston, MA.  Making these trips in one day requires direct flights.
    • We can except Southwest Rapid Reward points.  Please bear in mind that Southwest charges $1 per point transferred.  For our RR member information, please email
  • Sam looks healthy and I see a lot of pictures of him having fun and being healthy.  Why does he need to keep going to Boston?
    • Sam is doing remarkably well.  We take pride in packing his life full of fun experiences.  Unfortunately his condition in incurable.  It is the fact that we are able to continue to go to Boston that is keeping him so healthy.  Without these trips we would not be able to keep Sam on Omegaven currently and would open him up to a risk of suffering liver damage again.
  • When will Omegaven be approved by the FDA?
    • We don't know.  There has been positive movement towards approval, but the future is still uncertain.
  • If Omegaven is approved will Sam still need to go to Boston?
    • We have not made a decision regarding where Sam's care will be managed when Omegaven is approved for use in the U.S.  Boston Children's Hospital has been providing Sam's care for seven years.  We have a team that we know and trust.  Our hope is to still have Sam's care managed in Boston, but we hope to be seen less frequently once we can get Omegaven delivered to our home.

Sunday, July 19, 2015

"Family" Reunion

Recently our family traveled together to spend a few days in Gloucester, MA ahead of a regularly scheduled appointment in Boston.  We shared a house with four other families made up of some of the most amazing people in the world.

When you look at this group of people, they don't have much in common.  They all have different political views, differing religious beliefs, come from different professions, and have varying heritages. None of them live in the same state as one another, in fact, they don't even all live in the same region of the country.

A stranger walking into our group would have thought we were having  a family reunion or were friends who had known each other since childhood.
All of these families are living with Microvillus Inclusion Disease.

I don't mean that someone in each of these families has a horrible, incurable, life threatening, disease though.  I mean that these families live life to the fullest every single way they can.  They have bucked the conventional thinking that MID is a death sentence or something that you "suffer" from.
We spent that weekend living.  Having fun.  Laughing at each other and ourselves. We may also have consumed copious amounts of food and alcohol - but what happens in Gloucester, stays in Gloucester.

Sometimes the conversations turned serious.  We talked about challenges, disappointments, and frustrations we have experienced.  But these were sidenotes and not what anyone will remember about that weekend.

Many of us have children who we were told would never live to the age of 2, and that we were fooling ourselves by thinking there was an alternative to having a transplant with poor long-tern survival rates.  We were told that you can not have quality of life and live long term on TPN.

We have learned through experience and from each other that this is not the case.  We are not fighting a disease, but fighting to make sure that our children see past  it and know it doesn't control their lives.
We want to thank them all for sharing their lives with us and being the awesome people they are. They truly know how to Dream Big, Live Life!