Sarah Grace's Medical Journey

We are fundraising to help with unexpected medical costs for our 13 year-old daughter, Sarah Grace. We are asking for your help in providing her with an exciting procedure that will go a long way toward successfully treating her rare congenital condition of lymphatic malformations - an always life altering, and sometimes life threatening disorder of lymphatic overgrowth (tumors). Your donation to this cause will truly change lives:

In November, Sarah Grace experienced a flare up of her lymphatic malformation (LM). This flare up is mainly in her left cheek and up toward her left temple area, around her eye, on the roof of her mouth and on the inside of her cheek. It has been a very challenging couple of months full of doctor appointments and waiting. Her surgeons in New York City, the ones who have always taken care of our girl, thought the best course of action to treat her current flare up would be a bleomycin (bleo) injection to the flared up areas. So, on Friday, December 22, Sarah Grace had a bleomycin injection to the flared up LM (this procedure is also know as sclerotherapy). Bleomycin is a drug that when injected into the diseased lymphatic tissue makes it die out. This means that the injected LM will not flare up again. But, the thing about LM is that sometimes the tissue lies dormant and that is why flare ups occur. The surgery on December 22nd was successful in helping to reduce the swelling caused by the LM. However, the underlying LM still needs to be addressed.

Sarah Grace has been put on a list to have a different procedure performed, which is named Bleomycin Electro Sclerotherapy (BEST). The surgeons who operate on her in New York have been performing the surgery for a few years now with great success and they think that Sarah Grace is an excellent candidate for the surgery. The difference between a bleo injection and the BEST method is the mode of which the drug is delivered. In the BEST method the bleo is delivered through electric currents which allow the surgeons to pin point exactly where they want the bleo to go and they can use less of it ~ definitely a win-win. The only thing about the BEST method is that the instrument used is not yet approved for use in the United States, so we will need to travel to Athens, Greece to have the procedure performed by the same surgeons who take care of her in New York. The surgery costs approximately $18,000 and we are expecting the travel and lodging costs to be about $6,000 for a total of approximately $24,000.

For those of you who are new to our story, Sarah Grace’s lympahtic malformation is not life threatening. However, her treatment has been and will be life altering. Having these procedures done will help her not have so many flare ups in the future. This current flare up has caused her a lot of pain and even double vision. We are looking at addressing the underlying diseased tissue that is unpredictable especially now that she has hit adolescence. At this time in her life, there is great potential for the LM to flare up. The LM can flare up and create disfiguring tumors, it is this we are looking to prevent.

We have been on this healing journey with Sarah Grace since she was born. LM is very rare. The Lord led us to her surgeons in NYC in late December 2011 when she was 10 months old. Since then she has a lot of surgeries and procedures. Some were to excise the LM tumors and others (such as sclerotherapy) have been done to help reduce the amount of LM around her left eye/cheek and mouth. This past trip to NYC was our 50th trip since December 2011. And that does not include the local trips to see her ophthalmologist and other doctors. If you are interested in hearing more of her story thus far, please reach out and I would love to share the details with you; it is pretty amazing how the Lord has worked in our lives through this medical journey. If you interested in learning more about LM and her surgeons, please visit www.vbiny.org.

With all of this said, we are looking to fundraise to help with these unexpected costs. Since the surgery will be in Europe, our insurance will not cover the cost of it. We will also use the funds raised to buy airline tickets, and to pay for lodging, transportation and food while we are in Athens. We are in the middle of making plans for multiple fundraisers. But, we are asking for your help in providing our daughter with this exciting new procedure that will help her in so many ways. We appreciate and love all of you. Please continue to keep Sarah Grace in your prayers.