Baby Jai Thomas Turpin
Baby Jai is most likely suffering from Early Onset Epileptic Encephalopathy, either Ohtahara Syndrome or Early Myoclonic Encephalopathy. Both syndromes are similar, extremely uncommon, and both have unfavorable outcomes with life expectancy ranging from a few months to a few years.
We plan to bring Jai home soon and provide him with the most love and the best life possible. We've always known that was our purpose.
He is breathing on his own and enjoying breast milk mostly by feeding tube and is working with developmental specialists to feed by bottle or breast. You should see how strong he is, despite the seizures he has. He opens his eyes and makes noises at us, cries out, coos, smiles (especially about that milk), shows us all sorts of expressions that reveal his likes and dislikes. If he's on his tummy he'll lift and change his head position on his own. And so much more. He is so sweet and so perfect. We and our families and friends have fallen in love with him along with every NICU nurse. He's brought joy to our lives and given us the most happy and precious days we've ever known.
We ask for your continued support, positive energy, and prayers. Please know that you can continue to reach out to us in any way you can, know that we may not respond to you immediately but that we do need your love and support for what is the most beautiful and devastating time of our lives. Despite this prognosis we will be seeking second opinions. We will also not give up hope.
Update: Brianna & Ryan found an epileptologist at the Children's Hospital of Orange County who specializes in the very rare syndromes that Jai has. Baby Jai arrived by helicopter transfer on Tuesday afternoon, March 7th with his parents following by car. Jai is now surrounded by over a dozen highly motivated and intelligent neurologists, epileptologists, geneticists, metabolic specialists, and more. Every day there's more tests and waiting for tests. This year alone they've seen 4 similar but not exactly the same conditions. We feel confident that his care here will lead us to a diagnosis and plan to move forward. We are so grateful for the genuine loving care provided by the Cottage Hospital nurses & doctors. We are also so grateful and humbled by the outpouring of love, prayers, and efforts of our friends and family during this time.
These funds will be used to help with the care and medical costs of Baby Jai.
Thank you to everyone for the continued support. We are so grateful for the family, friends, and community that we have. One of the greatest gifts of Jai's life was bringing so many people together. We heard that the process of grief and losing a child is lonely, but we have not felt that way. On the contrary, we have felt surrounded by love and held by all of you. We hope that in some way his life provided you with some new appreciation or perspective for life and love. For us this blessing will live forever with us. We feel his presence surrounding us now and if this is your belief too, you should know he's watching out for you.
Our experience with Jai has brought us closer together and all the love we had for each other before has new depth now. We received the advice to lean into one another deeply during our grief and that is what we have done. Ryan has been back at work since mid-May and has welcomed the supportive environment and the effort in staying busy. Brianna has not yet returned to teaching and her time has been occupied with all levels of healing. Though things will never be "back to normal," we are finding new normals and new happiness.
Because of your love & financial support we have been able to take our time in mindfully healing with much less worry. When our friends and family first created this fund, we had hoped to use it for therapies and assistance in Jai's lifetime with us at home. We'll always wish that we could have had that time. We remember sitting in the hospital with Jai and receiving notifications about the fund; when we looked at it we were so deeply humbled and touched by everyone's generosity. Though thankfully most of the medical bills were ultimately covered by insurance (Jai's short life tallied up over a million dollars in expenses), your contributions will also be applied toward grief counseling and other therapies, and to supplement time that was taken away from work.
We had very extensive genetic panels done for all three of us, and they found that Jai's condition was not genetic, that something within the first couple weeks of gestation formed incorrectly. We could never have prevented or known about it. Jai's life was mysterious in many ways and there are some things we'll just never know.
We greatly treasured Jai's time with us and want to continue his legacy of peace, connectedness, and love. It is with a sense of joy and gratitude that we will always include him in our lives and conversations with you and with one another.
If you have stories you'd like to share or want to check in, it is always welcome to reach out to either of us. :)
You may notice that David Turpin, Ryan's wonderful dad and Jai’s grandpa, now shows as the beneficiary on this page. He has set up a special interim account for this cause in order to facilitate the monetary transfer to Ryan and Brianna when they are ready.
The funds raised will help cover the costs of the medical care and research for Jai during the time we had him here with us, to support Brianna and Ryan as they process this tragic loss, and the legacy that Ryan and Brianna would like to leave for their beautiful baby boy.
Again, your heartfelt generosity and positive energy has meant so much to us over the course of these past few weeks. Please continue to support Ryan, Brianna, and family in your thoughts and prayers. We are forever grateful.
It is from the deepest and darkest part of us that we write you to tell you that our sweet baby Jai passed peacefully in our arms last night at 1:15am. He was placed on life support the day before as he continued to struggle with breathing and after test results came back letting us know his syndrome was not treatable and life support would escalate, we made the decision to take him off of the life support around noon and allow him to spend his last moments naturally.
We spent the afternoon on a private outdoor patio, it had always been our wish that he be free without cords and tubes and under the sun. He breathed fresh afternoon air, his eyes fluttered open to see us and the sky. He was visited by close friends and family, told how much he was loved, sang to, and held close. He drew his last breath in our arms and he was truly at great peace. We believe some of this grace was from your prayers, love, and energy that you surrounded us with these past few weeks. For the three of us, it was the best 12 hours of our lives. We can't tell you how beautiful it was to have our sweet baby out of hospital cribs and in our arms. The past 3 weeks will remain the most beautiful, precious, and devastating time of our lives. Jai showed us what love was like beyond our wildest dreams, we will always carry that with us.
With a deeper understanding of love,
Brianna, Ryan, and Jai
We encourage you to please share your stories about Brianna and Ryan on the comment board. Keep sending that love, positive energy and prayers to Jai, Ryan and Brianna.
I will continue to share updates as we learn more and new information is found. We are incredibly thankful for the support of health insurance but it does not cover everything. I have upped our fundraising goal and will update as we understand more about Jai's medical needs for the future to give him the best quality of life possible.
Hi could the person whom has set up this go fund me contact me please privately? I think I might have some information that could help and be valuable in this critical time, and i don't want to invade or overstep privacy boundaries so I'd like to send it to you, a family member or friend who is closer to this family so it can be shared at an appropriate time. Thank you. Sending you all healing thoughts and an abundance of love... ♥
Love to you both. I am so glad that the funds are being used for you to take good care of yourselves and heal in whatever way you need to. I am looking forward to connecting with you soon.
So beautiful!!! So much love your way. Blessings.