Welcome back Team Grizzly!
Here we are, after quite a year, back for our beloved NEHA in our 4th year walking for Team Grizzly in the Unite for Bleeding Disorders walk! This is one of our favorite events of the year and one that we work so hard to support.
This year has proven challenging in so many ways! The pandemic has affected so many of us in ways, both physically and mentally, that will be with us for a long time. Through this whole thing, our main concern has been keeping the cubs out of the hospital as much as possible, which seems an almost impossible task if you know our cubs! We worried all year about how to keep them safe, which sent my anxiety through the roof. There is this ever delicate balance that we strive for in allowing the cubs to be kids and still keeping them safe. I feel like I still haven't found it yet and constantly worry that I'm making the wrong choice, but we try daily to achieve that balance and will always continue to do our best for them.
The cubs are, thankfully, all doing well! We have had numerous ER and clinic visits this year but somehow made it through with only 1 cast and a handful of MRIs between the 2 kids. After 3 months of somehow avoiding the ER during the worst of the early pandemic, Lila hit her head on a radiator which required a head scan. Luckily, there was no head bleed. Teddy did have one super scary fall where he slipped and hit his head which required a rushed emergency infusion and dash to the ER. We are so grateful that the bleeding stayed outside his skull but it went right up to it and resulted in multiple additional infusions over the week and impressive bump/bruise that stayed around for months. Right after Christmas, Ted tweaked an ankle standing up from the couch, which required an ER visit as he wouldn't put any weight on it. That ER visit was one of the most traumatic we've had since before his port was put in. He screamed and shouted and cried, scared to have a cast put on. It broke my heart having to hold him down while they worked and sent my mind right back to all the trauma from his first year that clearly still sits just under the surface emotionally. We are so grateful that things weren't worse.
Both Teddy and Lila are playing Tball this year as well. They are loving it! Lila is about to start PT for frequent pain behind her knees but is doing great. Every Saturday morning before his game, Ted receives an additional infusion of his factor to keep him as safe as possible while he plays. The risk for both kids to play sports is always there, heightened for them both with any risk of bleeding. The fact that we have to put a needle in Teddy's chest each Saturday morning before he can go play is still hard to wrap my head around. I'm not sure we will ever get used to it, but we are as determined as ever to make sure these cubs of ours are able to be kids and do all the things they want to do as safely as possible. Charlie, the sweetest and most wonderful big brother you could ask for, keeps a close eye on his younger siblings, helping however he can to make sure they are being careful and making sure that friends are being careful around them too.
Those of you who know us, know just how important NEHA and our bleeding disorder community is to us. Throughout this whole crazy year, they have continued to support us and educate us and advocate for us. NEHA has had an incredible emergency relief program that is used to help families like ours with the insane cost of living with a bleeding disorder. This year has been so hard financially for so many and we are so grateful and lucky to have the support of this organization to help our community and this emergency support is needed now more than ever. The cost of living with hemophilia is astronomical and it is one of the most expensive disorders there is. We are just so grateful to be here, in Boston, with the amazing support of NEHA and our incredible medical team as for so many, a world without bleeding disorders is simply a dream. Thousands of kids and adults affected face internal bleeding, costly treatments and lifelong infusions.
I’m all in to help end bleeding disorders. My personal goal is to raise as much as possible for this worthy cause. Will you help me reach my fundraising goal? It’s easy — just click “donate” to make a secure donation.
Every dollar stays within our community and supports critical initiatives such as funding research to find better treatments, educating medical providers on the latest innovations and care, ensuring families have access to quality healthcare and providing access to the best educational resources available.
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Thank you in advance for your support and united, we will make a difference.
Kate, Andrew, Charlie, Lila and Teddy Bear