Bravery Is… Rowan
Dallas Family Documentary Photographer – Hunter Syndrome
Too often I see others around me receiving dramatic news that pretty much flips their lives upside-down. The best I can do is try to put myself in their shoes to get a small glimpse of what they are experiencing. My heart hurts so much for all of these families! I just had to do something to give back and help them cope. After photographing the Musick Family, I decided to start an ongoing special project called “Bravery is…” to give these families photos to cherish for the rest of their lives. Bravery is… Rowan, the very first story in this never-ending special project, and 100% dedicated to Rowan’s bravery.
I’ve known the Musick family for many years. Heck, Nick (the Dad) was even the Best Man in our wedding! We didn’t stay in constant contact, but we had each other as friends on Facebook. One day I saw a post from Kristen (the Mom) that completely broke my heart… their sweet little boy was diagnosed with Hunter Syndrome.
What is Hunter Syndrome?
Hunter Syndrome (MPS II) is very rare, so rare that almost everyone I’ve talked to about it had no clue what I was talking about. This condition affects about 1 in every 100,000 to 1 in every 150,000 males. Hunter Syndrome is a genetic disease that results in the body not able to produce specific enzymes. “Normally, the body uses enzymes to break down and recycle materials in cells. In individuals with MPS and related diseases, the missing or insufficient enzyme prevents the proper recycling process, resulting in the storage of materials in virtually every cell of the body. As a result, cells do not perform properly and may cause progressive damage throughout the body, including the heart, bones, joints, respiratory system and central nervous system.” (National MPS Society)
Here is a wonderful video from Project Alive that explains what MPS II is.
There is no cure just yet (keep reading to learn about a new development), but there are treatments that can manage the problems that come with this disease. The treatment Rowan is receiving is called Enzyme Replacement Therapy, and he will be getting them every week for the rest of his life. There were only a few Children’s Hospitals in the United States that could help with Hunter Syndrome, so they chose the one in Dallas so they could be closer to Nick’s family for support. Kristen started writing in a blog about her journey, and in one post she said,
“…it’s wonderful to see all of these people we love, but then the reminder of why we are here creeps into my head, and it’s like a chasm opens up inside me. The fear and the sadness and the desperation to be wrong about Rowan just wells up and I almost feel like I’m going to drown from the overwhelming wave of emotion. Is it normal to want to be wrong? Is it normal to want to ignore reality? Because I do, so badly. It’s difficult to put on a smiling face and pretend that I’m just fine because I am not. I am not fine. As Rowan’s first doctor visit nears, I find myself getting nervous and hopeful and a range of other emotions that it’s hard to find words for.”
After reading about Rowan, I immediately started thinking of ways that I could help. I do Documentary Family Photography in Dallas, so I knew I wanted to use my skills to document their journey while here… but I wasn’t sure how to go about it. A professor we had in college, Phyllis Tedford, who knew us very well reached out to me with the same idea I had and helped coordinate it all. I may not have had the guts to peruse this project if it wasn’t for her taking the initiative! A few days later we were all preparing for Rowan’s first appointment with the Genetics Team.
Meeting the Genetics Team
I met Kristen and Nick at the Children’s Hospital and got to work! It was a bittersweet moment since I hadn’t seen either of them in what felt like forever! We ended up staying in the room for close to 3 hours! Here are some of the photos I took of them that day.
“We met with a social worker and a genetics counselor first, and they were extremely nice and knowledgeable about MPS II. The difficult part was explaining our story again, and how we came to this diagnosis, and while it’s getting slightly easier for me to talk about, it is not easy for Nick. I hate to see him so affected because he’s always so indomitable and strong. I feel helpless that I can’t fix things for him either. No one can tell us how Rowan’s future will go, or how he will develop with this disease and the uncertainty is terrifying.”
“The best news was that he is so optimistic about Rowan and how much the enzyme replacement therapy may help him. Dr. Umana told us that Rowan looked great, he was exhibiting some of the more common MPS symptoms, but he didn’t see or hear any heart or lung issues, and he seemed to be just where he should be developmentally, so he is extremely optimistic. Rowan is also one of the youngest patients he’s had with MPS II, which means that we are catching it early enough to really prevent some of the worst damage. I feel such an incredible sense of relief to know that this doctor has such confidence in my little boy, and in the pediatrician who will be walking this road with us. “
By the end of the loooong appointment, everyone was emotional and getting stir crazy… especially Ramsey and Rowan. Afterwards, we all went and waited for Rowan to get a full body x-ray to see how the disease had progressed, and then they would start trying to schedule his first enzyme replacement therapy as well as coordinating a surgery.
Each infusion lasts about 4-5 hours, but this first one was longer since it took a while to get the IV in place. The amazing nurses at this Children’s Hospital had books and bubbles to try to distract the boys, but poor Rowan’s veins were just too tiny! All future infusions are expected to go far better than this one since he will be having surgery to put in a port. The port is a small disc that is implanted into his chest right under the skin, and has a line going directly into a vein. It gives the nurses a direct access to a vein without any pain or trouble!
“Rowan refers to his port as his “superhero bump”, which is adorable.”
While we were there, Rowan kept letting the nurses look at his” muscles” to look for a good vein for the IV. It was SO adorable! And heartbreaking at the same time. The strength Mom and Dad have is unbelievable! The process of actually placing the IV wasn’t too easy, and as you can see from some of the photos Rowan didn’t enjoy it either. Eventually we had to go into a dark room where the nurses could look closer at his veins with a special red light. Laying Rowan down on a crib is what did the trick, and they took note for next time!
“His first infusion was this past Tuesday. We were worried, Nick and I, about how it all would go. Fear of the unknown more than anything. We also knew he was extremely difficult to draw blood from, as the last few times the doctor had to do an artery spike, so the prospect of sticking him with an IV did not seem like it would be pleasant for anyone, least of all him. And as we expected, it did not go very will when they tried to set the IV. A special team was paged, and they finally got it, and got his medicine going. And Rowan sat in his chair for 5 hours and didn’t complain once (well, he wasn’t very happy about my choice of lunch for him, but other than that). But look at this kid, he was AMAZING.”
“Things are all falling into place, and it makes my heart so happy. We’ve got him scheduled to have his port surgery done, and his ENT, Pulmonary, & Cardiology appointments are set. It’s all good news, yet overwhelming. There are endless phone calls and people who want to talk to me about all kinds of “grown-up” things, and I don’t feel ready for any of it.”
“I find myself wondering ‘Aren’t my parents supposed to take care of this stuff? When did I become the adult???’. But the adult I am, and these things all need to be done, because I have two incredible little boys depending on me. It’s a powerful love, this love for my children. Unlike any I’ve ever experienced or heard of. They are truly my heart and soul. “
The big day finally arrived! Surgery Day! This was the day where Rowan got his port put in and his tonsils and adenoids removed, and they took a closer look at how his lungs are doing. With Hunter Syndrome, the tonsils almost always have to be removed to help the child breathe easier. It is one part of the body that will enlarge over time and can help open up the airway.
I met Nick, Kristen, and Rowan at the Children’s Hospital again in Downtown Dallas. I photographed them in the pre-op room as they changed Rowan’s clothes, prepped him for surgery, and talked with all the surgeons. There were so many emotional and scary moments! It was very hard for me, from Mom to Mom, watching your child be prepped for surgery.
While Rowan was in surgery, they gave us one of those pagers that you get at restaurants to let you know when the doctor wants to speak with you or when the surgery is complete. Nick, Kristen, and I went to the cafeteria to grab a bite to eat, and just as we sat down the pager went off! The words on the device said that a doctor wanted to speak with a parent… we all sort of freaked out just a little bit because he hadn’t been in there very long! Nick dropped everything and hauled butt back upstairs just as Kristen received a phone call from the nurse! Nothing was wrong, there wasn’t anything to panic about! Whew! It was just the surgeons being absolutely amazing and updating us on what was going on and letting us know they were done with one part of the surgery (as there were 3 different parts). Nick came back down and we all ate for about 10 minutes when the page went of again! Nick hauled butt back to the nurses station! It was another update, and a good one! And then we were all requested to go sit in the waiting area near the OR so that updates could come easier.
Rowan was finally out of surgery and it was time to go back and see him. The wonderful nurses there let me go back with them to continue taking pictures.
“The recovery nurse first commented on how amazingly well he was doing, as most three-year-olds come out of anesthesia screaming, crying, and ripping at all of the wires on them. Rowan just sat quietly, and let me hold him, and fell in and out of sleep. She said that he was the best three-year-old she’d ever seen, and I’m not going to lie, I swelled with pride a little bit.”
We all followed as they rolled Rowan to his own room from post-op. Once there, the nurse from post-op updated a few others on Rowan’s condition, what surgery he had done, and what to look out for. He was such a brave little kid! I couldn’t believe how well he did! Not one actual complaint about how he felt or what was going on. He was so chill and just enjoying his popsicle.
What Can We Do?
“We need your support, help, and love now more than ever. There is no cure for Hunter Syndrome, though there is a treatment, Elaprase, the second most expensive medicine on the market. Rowan receives weekly 4-5 hour infusions of a synthetic enzyme replacement, which helps break down those complex sugar deposits to alleviate the tissue hardening and increase mobility. The reason it’s so expensive is because of the rarity of the disease. There are only 2,000 cases in the world, 500 in the US. There is a ray of hope for us, however, as there are two scientists who believe they may have found a cure in gene therapy, and are working to get to clinical trials.
We are asking for your help. Medical bills are mounting up and we want to do all that we can to make this gene therapy a reality. Any amount helps. If not, please leave words of prayer, love and encouragement, as your support means more than we can say.”
Please click Here to view the crowdfunding page.
Watching our children grow is an experience that’s hard to explain. There is so much love felt in our hearts and bodies as we watch our little baby crawl for the first time, walk for the first time, and eat his/her first solid foods. We are so proud when they can play on a playground and go down a slide all by themselves, or pick out shoes to wear and try to put them on.
Now, imagine yourself as this parent and being forced to accept that at some point all of this will go away. At some point within the next few years, your child will start to forget how to talk or walk, or do other simple tasks. Imagine the doctors telling you that your child may not make it to walk across the stage to graduate from High School.
If someone told you there was a cure that could save your child’s life, what would you do?
Please take a moment today to spread MPS awareness today, on May 15th. Share this blog on your Facebook and social media accounts, and let everyone know that this rare disease exists. The more people we can share this with, the more support the Musick family has and the closer we can get to a cure.
Thank you for taking the time to read this blog post!
Much love <3 Lawren