During our trip to Boston, we had the privilege to attend our first CLOVES Family Conference.
I did not anticipate feeling so emotional upon entering a room filled with strong, tough kids going through life with the same syndrome as Tessa. Because CLOVES Syndrome is so rare, I had not had the chance to meet (in person) anyone else with it. It was overwhelming to actually be in a room filled with people who not only know what CLOVES is, but deal with it personally each and every day. I saw some of the toughest kids I’ve ever seen in that room. Such hardships are placed on those little shoulders, but each one I saw learned to adapt, just like Tessa has. It’s amazing.
Each child received this sweet picture book about dealing with their uniqueness. 💚
Thanks to the trusty iPad, Tessa remained entertained.
until she just couldn’t hang any longer.
At the conference, we…
*Heard from a photographer who took a special interest in photographing people with differences and disabilities in a positive light, and sharing their stories.
*Heard from Dr. Adams, the co-director of the Vascular Anomalies Center at Boston Children’s Hospital.
*Had a question and answer session with doctors.
*Participated in small group sessions.
*Heard from a doctor in France, who has seen incredible success in several patients using a drug called BYL719, or Piqray. Dr. Canaud’s presentation was fascinating. Individuals with severe vascular malformations have experienced a significant reduction in the size of their malformations while on this drug and it has been life changing for them.
Some US patients have been able to try this drug, although obtaining it is a very difficult and lengthy process.
However, the drug was just recently approved by the FDA for use in breast cancer patients, which is going to make it almost impossible for CLOVES patients to get it now. Please pray for this process, and for the patients that are already on it as going back off of the drug will have very negative side effects.
Another item to pray about is for the help of a GI doctor to investigate why so many CLOVES patients also suffer from nutrition complications. This topic came up several times at the conference, and the doctors do not have any answers as to why this happens. Thankfully Tessa is stable right now on Peptamen Jr, but apparently this formula has not had such positive results in other patients.
Another item to pray about is for the help of a GI doctor to investigate why so many CLOVES patients also suffer from nutrition complications. This topic came up several times at the conference, and the doctors do not have any answers as to why this happens. Thankfully Tessa is stable right now on Peptamen Jr, but apparently this formula has not had such positive results in other patients.
I am so thankful we were able to attend this conference, and be with people who completely understand how stressful and scary this journey can be. There are many patients who have it much worse than Tessa, and our hearts go out to them. Once again, we are so incredibly thankful for all who have prayed for Tess, and for us. One thing we know with absolute certainty is that God created her exactly as she was meant to be, and that He is at work in her life and ours.
“And we know that all things work together for good to those who love God, to those who are called according to His purpose.”
Romans 8:28
“And we know that all things work together for good to those who love God, to those who are called according to His purpose.”
Romans 8:28
