Join Joen and I as we continue his journey in life by helping us get to Texas Children's Hospital in Houston, Tx.
JOEN AND OUR JOURNEY
Baby Joen is the youngest of 3 siblings. He was born October 14, 2014 where he spent his first 100 days of life fighting to survive in the NICU. It wasn't till after leaving the NICU his fight had only begun. Joen has a very rare genetic disorder called "double trisomy rescue" for chromosome 2 that results in mosaicism for maternal uniparental disomy. (basically he literally has more of ME!!!!) It wasn't till his genetic Dr. sat me down to inform me that due to how rare the disorder is there is no actual information she is able to give me in regards to his quality of life. I was told Joen may not walk, talk, have some mental issues, may never be able to eat by mouth, and most importantly didn't know his life expectancy. That day was a tough day for us all, but I chose NOT to let this stop his ability to live life to the fullest. I chose to push him, support him, encourage him, educate others on his behalf, and make his life a fun positive one.We cant change the disorder, but we can change the way we allow it to impact our lives. Not only does Joen have a genetic disorder he also has multiple other medical issues such as laryngomalacia, which is one of the reasons why he has a feeding tube, failure to thrive, bronchial malacia, gastrointestinal issues, as well as being a silent aspirator just to name a few. Life for Joen and our family is a little different. The children's hospital is our 2nd home, surgeries, scans, being poked by needles, all therapies, making forts out of Joen's medical supply boxes, making water guns out of medical syringes and being able to adapt to a sudden change has just been our normalcy in day to day life. Even through much adversity, together we have been able to stay strong, positive, laugh, have trust in one another's abilities and successfully persevere through it all to the point Joen no longer needed any type of medical care or equipment. My 3 year old son's hard work FINALLY paid off and "normalcy" was in his life.
His freedom from the medical world we were used to was short lived. (3-4 months). Out of nowhere, he went from a healthy, energized, fun loving, thriving 3 year old to a child that is having difficulties walking. Since November 2017 to now my baby boys body is deteriorating rapidly as well as causing new medical issues and concerns. Not only has he regressed to the point of having to be back on he feeding tube for 10hrs a day, go through therapies all over again, back on his medications, but he is now dealing with sudden vision issues, went from enjoying the taste of food (which is now causing him to choke, gag, cough uncontrollably and have difficulties in his breathing when he tries to eat at times.)to having difficulties even tolerating his tube feedings. He is unable to play with his siblings outside or run and be that active 3 year old, not only due to the severity of his muscle weakness, which is causing him to constantly fall and skin his legs, but also having respiratory issues and difficulties breathing by something as simple as walking. The hardest part as a parent is seeing how all your son's hard work and the enjoyment it brought him is now something that is no longer. His fatigue is starting to increase drastically. Even though Joen is constantly learning how to adapt to the new(and even old) changes his body is going through he hasn't stopped smiling, laughing, and giving me the strenghth to continue to see and be positive about it all. Drs. have advised us that a 2nd opinion is much needed.They all recommend Texas Children's Hospital in Houston, Tx. His Drs. are all coming together and doing what they can on their end to make this process as easy and fast as possible for us.
We Need Your Help To Fight!
Nothing has been easy, nor the "normal" process when it comes to Joen. So naturally, getting a second opinion or even seeking out medical care and treatment is not going to be easy for us. As I am quickly finding out medical coverage is either not covered or extremely expensive for the portion that even with insurance will be our out-of-pocket expense. After much discussion and calaberation with Joen's medical team of Drs, nurses, and therapists about which specialty Drs. will have the most impact on his care/and or be best utilized in finding why this is occurring to Joen. The specialty team of drs. will include: Genetics, Neurology, Pulmonary, and Gastrointestinal. This will be 4 Drs. 4 opinions, 4 Drs. ordering labs, tests, scans, evaluations, etc. in trying to put this complex case together and solve. It is also not uncommon for drs. to want us to add in a new specialty dr. and see what they are able to contribute as well. The funds raised will be going towards all deductibles, out of pocket orders, co-payments, travel cost for us to get down there, as well as finding child care coverage and costs back home for his 2 older siblings. This part of his journey is not going to be a quick and easy process. This will require multiple Drs. visits, tests, even possible surgeries( a biopsy has been discussed which might be 1 of the many surgeries). This will help baby Joen and I at least get our foot in the door and drs actively assessing him. The hardest part is not being able to help your child. Even though Joen continues to smile, laugh, never complain or cry about his struggles hes not where he needs to be health wise. I have been beyond blessed that Joen is such a happy boy, but HAPPY does not equal HEALTHY. My promise, purpose in life, passion, drive, and heart is to not only get my youngest son back to giving him the quality of life he once had, but all my kids when it comes to their health and well-being. Due to the severity and short notice of the Drs wanting Joen to get seen by Drs. in Houston, the funds of not just having a child with special needs, but being a parent of 3 children are not there at this time. With his increasing regressing the longer he is unseen by the medical team the worse I see my child get. As our journey and fight continue, I hope and pray we can all rejoice together for the day Joen gets back to the care free, healthy, full of life and energy son I once had. I know that together we have been able to conquered whatever came our way and will no doubt accomplish it again. Thank you all for your time and support! #A-team #letsdothis
- Lori Rendon
- Emmanuel Alvarado
- Ricardo Ortega
- Brandy Lockard
- Charlie Moreno
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more