This is a guest blog written by Zachary's father, Marc Berger.

Zachary is 11 and he has lymphatic malformation.

He was diagnosed when he was 16 days old. We knew he had cysts around his jaw and neck at birth but did not know what it was.

He was born two weeks early, just shy of his mother's last scheduled ultrasound. We often have wondered if his cysts would have shown up on that final ultrasound.

Right after he was born he was taken for an x-ray and ultrasound. When those were done and reviewed, we learned he did not have a tumor. He had a cyst. I emphasize "a" because that is what were told and we thought that, okay, worst case, he may have to have a procedure to remove it and we'll be in the clear. It wasn't something we wanted, obviously, but it wasn't something serious (or so we thought) and for that we were grateful.

Looking back at trying to give him a bottle for the first time, we actually asked the nurse for help and chalked it up to being first-time parents. But we later learned (and the nurse had no idea either) that it was due to his tongue that we had a hard time getting the nipple of the bottle in his mouth. But eventually we were able to.

When he went in for his two-week pediatric check-up, his pediatrician noticed a bruise on his neck and immediately sent us down from The Woodlands (40 miles north of Houston) to Texas Children's Hospital in the Medical Center for surgery. One of his cysts had bled into itself and it had to be drained. We had seen the bruise but thought we accidentally bruised him while burping him and trying to hold his head upright. This was also our first indication that we were not dealing with one cyst.

After that surgery, we gave the pediatric surgeon an earful as we had not heard anything with regard to what we were dealing with and what we should do with these cysts. When we were in ICU, our surgeon said he had 'our guy' and that he would stop by to talk to us on his way to surgery. He introduced himself as Dr. Joseph Edmonds and took one look at Zachary and told us that he had lymphatic malformation.

We stared blankly at him. We had no idea what that was. He proceeded to give us a brief explanation, told us we should schedule a consultation, and said that we would be friends for life.

There were a lot of Googling on our part after that, not to mention many counseling sessions with Dr. Edmonds! It turns out that he was one of very few specialists in the country dealing with LM in his patients and had been doing so for many years. We don't know how we got so lucky to be in the right place.

Zachary has been through a lot since then, 8 procedures/surgeries, 4 of which were sclerotherapy injections with a medicine by the name of OK-432, which is not approved by the FDA. It is a compound developed in Japan and we had to enter into a study and get accepted to do it. We are very grateful he was accepted, because it had a very positive impact. His macro-cystic cysts were basically poked full of holes and glued together so the liquid had nowhere to build up. To this day, because of those four treatments over six months (between 6 months and 12 months old), when you look at Zachary, it's often hard to tell he has any type of birth defect. It is truly amazing.

Unfortunately, those weren't the only cysts we were dealing with. His tongue and floor of his mouth are dramatically affected by this defect. His tongue is probably four times bigger than a normal tongue. The sclerotherapy was proven not to be effective when injecting the tongue, but Dr. Edmonds did do some injections under his tongue, on the floor of his mouth, but to no avail.

When Zachary was three, he endured a procedure where Dr. Edmonds used a laser on the surface of his tongue pretty aggressively to remove the bumps, bubbles and lesions he had. We chose to do that because he had been going through quite a few swellings close together in time and experiencing a lot of pain. That same surgery consisted of removing his tonsils and adenoids as well; giving him 20% more room in his mouth. You can imagine how valuable that space is to him! That was a six-week recovery where we did our best to keep him away from mirrors because his tongue was out of his mouth almost that whole time and scabbed for much of it.

Over the years, he has dealt with his tongue randomly swelling up to the point where it is out of his mouth and he cannot eat or speak. That and the pain were horrible, plus scabbing. Sometimes the swelling would go down without medicine in 24 hours. Other times, it was 5 or 6 days with tons of steroids and antibiotics. There was never a pattern, reason or understanding as to why his tongue would swell. Very frustrating. He has gone 15 months without swelling and then on other occasions, he has experienced swelling within the same month. No knowledge or understanding as to why or when.

Last summer, Dr. Edmonds performed a tongue reduction surgery on Zachary and that was by far the worst (and best) procedure he has been through. He actually removed half the width of his tongue by cutting a landing strip down the middle of 3.5 cm and sewing the two sides together. The worst surgery so far, you can imagine, because of the fact it was his first time actually being cut and we really did not know how well he would speak afterward, plus the pain of the recovery.

It was also the best surgery so far because it ended up being SO worth it! First of all, his tongue hasn't swelled since and it will be a year on July 3rd. And even if it does, we are fairly confident it will stay in his mouth. It's half the size it was and it looks and feels FABULOUS! And his speech is basically the same as it was before. He had a slight impediment before the surgery and still does but it's just a little different. But he is completely understandable and better yet, not concerned AT ALL about his speech and speaking to people and in front of people.

And that is the perfect lead in to Zachary, the person. What a little man. I know I am prejudiced, but he is wise beyond his years and has more caring and joy in his heart than most adults I've ever met. His smile is infectious. He loves to help people and to give. He doesn't think anything is owed to him and understands the benefit to earning it... in the classroom, on the baseball field and in life. He will do great things in his life. The people he touches are and will be forever changed for the better. We could not be more proud of him.

That frustration I mentioned earlier is one of the factors for wanting to be involved with LE&RN. The other has to do with that heart Zachary has. He and we want to help others. Even though we have dealt with and continue to deal with issues around Zachary's birth defect, we know many, many other kids have it WAY worse. And there are just too many unanswered questions around lymphatic malformation.