May 6th ,2021
#BillieEilish
#MaggieBaird
#SaveConnor
Dear Maggie:
I bet you never imagined that you would raise a teenaged mega-star?! Not because it wouldn’t be possible, but because it didn’t matter. We love our children no matter what. I’m the mother to Jonah a special needs child. The term special needs can mean so many different things. For me it’s what I say to new acquaintances when we’re talking about our kids. An attempt to avoid awkward situations by giving the other parent a heads up.
I watched the documentary. You don’t often see extraordinary parents just being parents on tv. I stumbled onto your children’s music when googling the release for ‘No Time to Die’. I realize now that I might be the last person on Earth to hear of Billie Eilish. Your children are profoundly talented, but you stood out as one tremendously gifted mother. It was hard watching the teenager angst, Billie brought back memories of my teenage years that I wasn’t interested in reliving. I turned the documentary off halfway through to give my brain a rest and finished it the next day. I was especially motivated to see how you and Patrick were going to shoulder the responsibility of your stressful parental job. I just couldn’t imagine. I’d like to think that if I was in your situation that I’d respond in the same way that you have. A standing ovation to you and Patrick!
Our son Jonah was so incredibly wanted; you don’t know how much until they’re actually here. I remember laying him in his bouncy thing in front of the television set. My husband and I took our meals on the couch, tv off, content on just watching Jonah sleep. He was so delicious, I ate, slept, and breathed him.
On Jonah’s first year well visit we took him to see a new pediatrician. Dr. Cao noted that Jonah’s head circumference was not typical, he wanted us to get an MRI to rule out hydrocephaly. I thought it was stupid, Jonah was perfect in every way, he had a big head that’s all. I liked the doctor and knew if we were going to continue to see him that I’d have to follow doctor’s orders. We had three cancelled MRI appointments, over the course of 6months, all for different reasons. I was so annoyed I almost just dropped it. Jeremy convinced me to take Jonah to NYU Langone. During that time, we enjoyed the perfect Norman Rockwell Christmas with Jonah.
Away from NYC snuggled in at my Mom’s cozy home in Oregon. Jonah was 17 months and walking, running actually. He was non-stop, but that morning, Christmas morning, Jonah was dazed. He woke at 5:00am and headed downstairs on his own, I jumped up and followed him. When he got to the stairs and looked down, he paused, dumbfounded. He walked slowly down the stairs holding onto the handrail, fixated on the tree as if it was a mirage.
My mom always displays a few presents unwrapped and out of their boxes. Jonah made his way towards those. My husband and Mom came down, we turned on the fireplace and made coffee and watched Jonah. The sun was rising, it backlit Jonah, his hair was the color of a peach, he glowed a Christmas morning brilliance. He was wearing a red and white stripped elf pajama onesie. His chubby little toddler hands putting together wooden puzzles. My heart grew twice the size that morning and unlike the Grinch’s it was already big. For this memory I am forever thankful for all the cancelled MRI appointments.
It was Spring by the time we finally got Jonah successfully through an MRI appointment. When the neurologist called me in for the results, I had completely forgotten about the MRI. Jeremy randomly had the day off of work, he offered to come with me, I told him to stay home and enjoy the day off, but he insisted. Another, thank god moment…. When we got to her office, there was an intern in the room with our doctor. The intern couldn’t make eye contact with me. You know how you know without knowing that something truly awful is about to happen. That twinge in your side.
Our neurologist looked Jonah over from head to toe asking dozens of questions. I was a bit relieved to be answering the questions in Jonah’s favor. She didn’t seem to find anything out of place, maybe I was just a nervous mom. Then she sat down at her desk and looked at me. Jeremy was getting Jonah dressed in the back of the office. She didn’t wait for Jeremy to join us, she started in on her deliverance. The results pointed towards a rare disease called mucopolysaccharidosis (MPS). Stop right there. WTF did you just say?
She just kept plowing through; she explained that there were several versions of MPS, but that she suspected MPS III, also known as Sanfilippo syndrome. I started to well-up, I turned to look at my husband, who was still oblivious to what the doctor was saying. Jeremy saw the tears streaming down my face and sat down. The doctor passed us a handful of prescriptions and tissue, it was evident that she had done this before. She explained each RX and why we needed to go. A sleep study, head to toe x-rays, another MRI of the spine, ENT, allergist, EEG, liver and spleen sonogram, GI and cardiologist appointments, but first we needed to go to the geneticist. She had already made the appointment for us. Lastly, she implored that we not google mucopolysaccharidosis when we got home. Of course, we did not heed her warning.
Walking home, Jonah in his stroller, my husband and I were numb, we couldn’t get our words out. I felt like I was walking on the sea floor with cinderblock shoes. We stopped at the wine shop and grabbed a bottle. Made dinner for Jonah and began the bedtime routine. As soon as he was down, we opened the bottle and googled Mucopolysaccharidosis. The results were unbelievable; there just had to be some kind of mistake. We forced ourselves to believe that it was somehow some freak mix-up at the lab. For the next few weeks, we kept telling each other that it was wrong, it was going to be ok. Jeremy went back to work, and I took Jonah to the appointments alone. We waited for blood results to come back. When they did, we were called back to the geneticist’s office, we arrived at the elevator at the same time as our geneticist. She looked at us, excused herself and took the stairs.
I don’t want to write this anymore. I hate telling my story, I won’t be able to sleep tonight. I wouldn’t mind if you put this letter down and took a mental break. This is a mother’s worst nightmare.
Dr. David confirmed the neurologist’s assumptions, Jonah had MPS III aka Sanfilippo syndrome, we still had to find out which subtype Jonah had. From our google search Jeremy and I already knew that Sanfilippo was the only MPS that did not have a treatment and was terminal without one. Death could be as early has 5 or possibly 25, depending on the subtype. So, there it was, we couldn’t deny it anymore. I can’t even begin to tell you how bad this sort of news hurts. I looked at the geneticist through my tears and asked her if this was a death sentence. She took so long to respond I hated myself for asking, but I had to know. She came back and said: “Today there are treatments never thought possibly, just five years ago.”
That was all I needed to hear. I hit the ground running!
There are 4 subtypes of Sanfilippo: A-D. A and B being more prevalent and more severe, types C and D are uber-rare, but thought to be less severe, but nobody really knows because it’s so rare. Types A and B both had research that looked to be heading towards clinical trial, so that was a bit comforting.
Jeremy and I went home, this time we started making phone calls, first to his brother, a lawyer, we asked him to draw-up the paperwork for a 501-C3. I called my mom and all of our good friends’ and rallied the troops. It was May 15th, 2010, we held our first fundraiser a few months later in Oregon, a wine tasting event. While I begged for money, Jeremy went to London to join an MPS conference. His mission- to seek out the scientist that would create a treatment for Jonah.
Jonah’s results came back type C. There were a couple of papers written on type C by a scientist named Alexey Pshezhetsky, from Montreal. I called his lab, he didn’t answer, I left a message. Alexey had discovered the gene that caused Sanfilippo syndrome type C. It was a month before he called me back. He had been on a rock-climbing trip in the Himalayas… who does that?! Anyhow, he apologized profusely in his watered-down Russian accent. “Yay, yay of cause of cause, I’m interested in MPS IIIC, it’s just that nobody asked me to do anything about it, so I haven’t.”
Alexey said the first thing I needed was a mouse model. He’d be happy to make us one, he had an idea about using chaperones as a treatment. We raised $40,000 at our wine tasting event. We met another family that kicked in another $40,000, we gave it all to Alexey’s lab. A year later we hosted our first patient population and scientific workshop in NYC. Which was held at Columbus Children’s hospital and benched by our new Scientific Advisory Board for our new not-for profit, Jonah’s Just Begun (now dissolved).
We brought in three scientists from three different countries and the handful of parents that we had assembled. Over two days we listened to our scientists hash out the best path forward for a treatment. We all went home motivated, the parents started fundraising and the scientists’ started interviewing for postdocs.
That was 11 years ago almost to the date. We’re coming up on several observable days, my husband and mines anniversary is tomorrow the 6th, today being Cinco De Mayo, Mother’s Day is in a few days and National MPS awareness day is the 15th. Nothing planned for our 15th anniversary, I did see some peonies at the flower stand on my way to the office. I’ll get a bunch and tell my husband that they’re from him, he’ll be relieved.
Observable dates, Jonah’s diagnosis date, can’t believe it’s been 11 years already. We had assumed that Jonah would not be walking or talking anymore by now. We assumed wrong! Jonah is fighting his fate, turns out that he has an attenuated form of Sanfilippo. Meanwhile we’re watching children Jonah’s age die from this insidious disease! For the doom and gloom of Sanfilippo, I’ll let you investigate it yourself. https://curesanfilippofoundation.org/
Maggie, this is my ask, mom to mom, would you please share a link for me? This is the story of Connor and his family, together we’re fighting to save our kids, saveconnor.com
I think you’re the perfect role model to endorse our cause. Please consider sharing on your Instagram site.
I know I don’t have to tell anyone anywhere in the world how awful COVID has been for everyone everywhere. I hope that you can help us keep the momentum of this video campaign hosted on gofundme going. The parents are still working, and our children are also still dying. We have had to get creative with fundraising and work around the COVID limitations.
Over the past 11 years I have been slaving over this cause. I created a biotech, Phoenix Nest. Our gene therapy program is ramping up, we’re almost ready to go to trial. The only thing that stands between our children and a treatment is funding. I am so sick and tired of begging for funding. Potential pharma partners are averse to funding research for small patient populations, they worry about a financial return. My biotech survives off of federally funded NIH grants, the grants that Phoenix Nest won are all in support of a treatment of Sanfilippo type D, not C as in Jonah’s version. The grants are intended to fuel small business in the US. My MPS IIIC research was primarily happening in Canada and the UK. I have recently remedied that by bringing our research to the US. I have applied for a IIIC gene therapy grant but I absolutely cannot count on winning it. The competition is fierce. Even more so now that funding for the NIH and the FDA is tied up in COVID research. Furthermore, the grant review process takes over a year from submission to funding. I can’t stand waiting by and watching these kids lose all their abilities. Enough is enough.
Happy Mother’s Day! I do greatly appreciate your contribution to the world. Your children’s music has been a much-needed distraction. Billie also inspired me to bleach my hair blonde and die my roots pink. I will be on the look-out for when Billie comes back to NYC.
Best of luck to all of you!
Jill Wood (Jonah's mom)
Jill and Jeremy @ Central Park, wedding day May 6th, 2006
