Brooks looks like your typical 6-year-old boy with a world of opportunities and his whole life before him. The devastating reality is that Brooks suffers from a rare terminal condition called Mucopolysaccharidosis (MPS) II also knows as Hunter Syndrome.

MPS affects all parts of the body including joints, muscles, growth, difficulty with speech, hearing loss, and severe lung and heart problems. It also causes neurological problems and loss of cognitive ability. Children with this disease typically develop fatal complications by the time they’re 10 years old. Brooks has had countless blood draws, infusion reactions, EKGs, surgical procedures, MRIs, Echocardiograms, lumbar punctures, cognitive tests, and the list goes on. He’s endured more at 6 years old than most people will in a lifetime.

We are extremely fortunate that Brooks was accepted into a medical research trial soon after his initial diagnosis in 2021. Many of you will remember when we had to leave our home in Fallston and relocate to Chapel Hill NC so Brooks could participate in the trial. In this trial, Brooks receives a new enzyme replacement therapy. This therapy can cross over to the blood brain barrier, which may help slow down the mental and cognitive regression. While it is still not a cure, I truly believe it is the best treatment available.

We had to stay in Chapel Hill for a total of 10 months and finally returned home in August 2022. Brooks is still in the trial and will be until the medicine gets FDA approval. We have an amazing nurse that comes to our home every Friday and gives Brooks his infusion. These infusions last for 4 hours and he has to have them every week for the rest of his life. Another part of the trial is we have to return to Chapel Hill twice a year- it used to be 4 times a year. These trips are long, stressful, and costly as Pete has to take unpaid leave from work in order to go. Pete also has to take unpaid leave every Friday because he wants to be home for Brooks during his infusions.

Pause for a moment to imagine knowing your child will die before they reach adulthood. What does this look like in your heart and mind right now? Imagine waking up to this reality every morning. Lying in bed at night knowing this is what the future holds for you. When other kids are learning new words every day and talking in sentences, yours slowly begins to lose their ability to speak. Then a couple years after is unable to walk and needs a wheelchair. Then, before they become an adult, they are gone from your life.

I refuse to accept this and will continue to do everything in my power to give Brooks the best life possible and help him live longer comfortably. But the reality of it is paralyzing and always in the back of my mind. How much longer until he starts to lose skills? We won’t know that until that dreaded time comes. Brooks still has full mobility, and we have no idea how long that will last. He has always been behind cognitively, but he is learning more every day. I’m so fearful for the day that stops.

Brooks is not like other kids his age. He cannot communicate or understand the same, but he loves to play and laugh.

Now that you know Brooks’ story, here is how you can help.

For the short window of time he has his current abilities, I want him to live the best life possible. His absolute favorite thing in the world is to swim. He loves water, absolutely loves it. Bring him to a pool and every time you will see the biggest happiest smile from him. I want to give him that so badly. There is also research being done on the benefits of Hydrotherapy on patients with Hunter Syndrome. The water is good for stiff joints and immobility the disease causes. If we get enough donations I would love to get him a small pool.

Your donation will help with the thousands of dollars in medical bills, lost wages, travel expenses and any upcoming unforeseen expenses. All of your donations, no matter the amount, are greatly appreciated, and every penny will go towards Brooks and his journey fighting this disease.

We are profoundly grateful for your love, prayers, and any financial assistance you can offer. If you are not in a position to donate, just sharing this link would mean the world. I also ask you to share Brooks’ story within your network. We want to raise awareness of Hunter Syndrome and pray that one day there will be a cure.

Thank you for taking the time to read this and I hope you can make a donation to our sweet boy however big or small it may be.