As promised, here is the information to join the HoFH Community. If you have been diagnosed with HoFH or are the parent of a child with HoFH, email them today to be added to the community!
Please note, I have no personal relationship with the FH Foundation nor do I stand to gain anything from this recommendation.
For those keeping track, so far I have found:
Good news though! The FH Foundation is currently in the process of creating a community for those affected by HoFH. More on that soon!
In life, as changes are made, it becomes clear who will walk beside you, and who will just walk away. Two years ago, when we made the choice to send Avery to a private Catholic school, some friends walked away. A year ago, when we made the decision to send Owen to pre-k at the same school, some friends walked away. I may have lost friends when we moved our children to a different school, but I’ve met so many new people because of that change.
I’ve said so many times since starting my own business eleven months ago, if you want to see who truly supports you and will be there for you, start your own business. Most friends weren’t my best customers. In fact, most friends wouldn’t even help me get my business going by hosting a party to help me grow my network. Think of each friend you know — maybe 200….maybe 500….and then each one of those friends knows another 200 or 500 people. Those connections could really help a friend who’s just starting their own business. I have always tried to support small businesses, especially when they were run by my friends. I shouldn’t expect anything in return. Lesson learned. But, because of my business, I have had the opportunity to meet countless women across the United States. I was able to enjoy a vacation with my family traveling to a state we’d never been to as well as spend several days with other entrepreneurs learning, networking and filling my cup. I’ve had an excuse to regularly get out of my house and spend a few hours with some great groups of ladies. I’ve had an actual job and for once I didn’t hate it… I haven’t done that in almost ten years. I’ve formed relationships with vendors I’ve met at various events and I’ve met lots of wonderful customers. Most importantly, I’ve made some truly wonderful friends all over the US, some of whom I talk to several times a day. And to those friends, I couldn’t have made it through the past few months without you.
Since learning of Avery’s diagnosis, we have gone in search of other people who have been diagnosed with HoFH. People who could tell us, we hoped, that everything we were reading about HoFH wasn’t true. That our daughter would live past 20 or 30 years old. That we wouldn’t have to worry that she could have a heart attack at any time. That she wasn’t looking at a life of multiple medications with god only knows what side-effects. That she would have to go through a blood cleaning process for hours every two weeks. That we could all just go back to the way things were a month ago.
Well, we haven’t met anyone who has been able to turn back the clock or predict the future, but we have connected with some wonderful people. Moms and Dads of children living with HoFH. Several grown men and women (yeah!) living with HoFH. And, many other individuals living with and/or caring for someone with FH. These people have reached out to us in multiple ways and shared their stories. They’ve invited us to reach out to them any time for help, information, someone to talk to, or someone to cry with. Total. Amazing. Strangers.
I’m a true believer in God placing people in your life. Friends come and go. Someone who was with you through one season of life may not be there for the next. As one person moves on another person enters your life. Good and bad, people surprise me every day. It’s amazing after almost 40 years on this earth how much you still can learn from mankind.
Today was a terrible, horrible, no good, very bad day. It started off ok taking the kids to school, but went downhill from there. In the morning, I had a check-up with my regular doctor, and as she’s known me since before Avery was born, I told her about Avery’s recent diagnosis. I quickly realized what I had been warned about was true. That even in the medical community, many know very little about FH and even less about HoFH. She suggested a vegan diet may help. I told her we had met with a nutritionist assigned to Avery at Johns Hopkins for about an hour after we met with the doctor there and were following her advice as a family. I asked if she knew of any doctors at any of the more well-respected hospitals in the area specializing in pediatric cardiology and/or pediatric lipidology fields as we weren’t sure the doctor we saw at Johns Hopkins was the best doctor to treat Avery. She suggested that there were probably a handful of doctors specializing in these fields across the US, which we already knew was the case. With a diagnosis like HoFH, it was very important to us to find a doctor who not only knew what HoFH was, but to have the specialized knowledge to effectively treat it.
Ok, so that was a frustrating and discouraging conversation. I left the doctor’s office and sobbed all the way back to town and then went home and cried some more. At dismissal time, I drove to the preschool and proceeded to sob and sob in the car while waiting to pick up Owen. The other parents must think I’m nuts. I waited until most of the parents were walking back to their cars with their child before walking up to get Owen. That’s when I made the mistake of trying to ask his teacher a question and began sobbing again. This time big, ugly, loud sobs. The poor middle schoolers down the hall must have wondered what a sea otter was doing outside their classroom.
I spent the rest of the day crying off and on and then crashed by early evening, totally exhausted from my emotional rollercoaster of a day. Tomorrow’s a new day, right?
I’ve caught myself doing things recently that I don’t recall doing with such frequency in the past. Mainly, I sit and stare at Avery. Over and over, I watch her getting ready for school each morning and doing homework each afternoon. I watch her getting ready for ballet and getting ready for bed each night. I watch her play with her brothers. I watch them chase each other, laugh with each other, fight with each other. I watch her walk down our front walk to the car in the morning, and run up the walk to our house each afternoon. I watch her walk into school each morning, hoping she’ll be ok. Wishing I could stay with her each minute to keep her safe even though I know the reality is not much I do can keep her safe.
It’s almost like I’m trying to commit everything to memory, afraid one of these days it could be the last. The little moments of each day have become the moments I don’t want to forget.
Avery's Fight 