Hello to all our friends and family reading our first entry! It took me a while to think of the blog title name, but the journey we have ahead for Dorian and Wynn will be just that-- an adventure. If you were to look at them and hold them, you'd never know that they have an extremely rare terminal disease.
Around Thanksgiving, after a month of being in the NICU, our neonatologist warned us that she thought all their symptoms looked consistent with a very rare genetic disease called Mucolipidosis II. When she gave us the information about the disease, she was clear to say that IF the babies had ML II, that it would "change your life forever" since most kids with ML II do not live much past their 5th birthday. So for the next 3-4 weeks, Chris researched everything he possibly could on diseases that had the same symptoms the babies had -- but we kept on praying and hoping that it would be something else. In fact, we were thinking so optimistically, we had basically dismissed the ML II warning from our doctor because we were confident that the babies would be ok -- maybe just have some mobility constraints due to their bone deformities found in early x-rays. One month later, our neonatologist finally confirmed what we didn't want to hear -- that indeed the babies had ML II. The diagnosis had finally been confirmed by a blood serum test, and followed up by a genetic test, both tests sent to genetic specialists on opposite sides of the country. So yes, we are sure they have ML II, and yes, we have gotten a second opinion.
Of course, hearing that your baby that you love and have prayed and hoped for has a terminal illness has been an incredible blow to us. They are so sweet, so lovable and so cuddly, that it seems unreal that their lives will be cut short. It's been a whirlwind of emotions for both of us -- it's unfair, it's sad, it's angering -- but it's a reality that we are getting our heads around.
To explain it in laymen's terms, ML II (also known as I-Cell Disease) inhibits the body's cells from recycling substances throughout the body, so the cells begin to accumulate the excess carbohydrates and enzymes and fail to function properly. Most babies get diagnosed after their 6th month of life because by then the symptoms have begun to become evident. To our advantage, our doctors at Trinity Medical Center and Medical City here in the Dallas area knew from the day they were born that Dorian and Wynn were not normal. The likelihood that a child is born with ML II is 2 in 1 million births. Hence, most general practice and pediatric doctors can practice medicine for 30+ years and never hear of this condition, let alone treat a child with this illness.
Some of the affects of this disease is limited mobility, bone and joint dysplasia, hearing problems, ear infections, pulmonary problems, cardiac problems and pyscho-motor delays. Although there is no crystal ball to tell us how severe Dorian and Wynn's symptoms will be and which ones they will have -- the prognosis is basically still the same. With no cure in sight and with little to no clinical trials and studies currently underway, we are not hanging our hopes on a miracle cure. We are resolved to continue loving these babies as much as possible -- not dwelling on the the difficult road they will have ahead, but celebrating the blessing we have in them. We have promised each other to give them as happy and full a life as possible, no matter how short it might be.
Ben and Alex have proven to be loving and attentive big brothers. They have no idea that anything is "wrong" with their twin baby brothers. Since B&A are not even 5 yrs old yet, we are not ready to tell them about this disease and what it will mean in the future to them and to their little brothers. We figure those will be discussions we'll have in the future once Dorian and Wynn's health begin to fail. But for now, we are a regular family just hoping for the best.
We appreciate all the love, support and prayers that we have received from our friends and family over the past couple of months. I started this blog for 3 reasons:
1) Chris and I felt it was easier to update friends and family via this blog than it is to make countless phone calls to update those that have expressed their concerns for staying informed about the babies. So feel free to check in often to this blog to get the most up-to-date information on the treatments, tales and triumphs we'll face over the next few years. Also, it's nice to keep loved ones up to date through the blog- versus each conversation eventually going to this every time we talk with people. Even though this heartbreaking disease has consumed our energy, we don't want it to consume our lives. So every time you call, we may just not be in the mood to talk about it. Hence... the blog.
2) Years down the road, once Ben and Alex are old enough to want to know details about Dorian and Wynn and what they went through, it will be like a virtual diary they can read as often as they want.
3) We feel it's our responsibility to spread the awareness about this disease. We know how painful it is to learn that your child has this, and anything we can do to give attention to this family of disorders can help other families as well. To learn more about ML II and other lysosomal storage diseases, check out www.mpssociety.org/content/4043/ML_II__ML_III.
Although I'm a writer by trade, this blog comes straight from the heart -- sometimes it'll read like I'm rambling, other times it'll sound like I'm mad or sad. Whatever it is -- it's our life we are living and this blog will give you a glimpse of what we are going through. I can't promise that I will update it weekly or even monthly, but we'll give you our highlights as often as we realistically can. Thanks to all for being our rock solid foundation throughout all of this.
ps- i have no freaking clue how to format pictures and videos on here, so please bare with me while I learn how to use this application. thx!