Baby Jai Thomas Turpin
Donation protected
Our sweet baby Jai Thomas Turpin was welcomed into this world on February 24th at 11:35am.
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.
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.
Organiser and beneficiary
Olivia Welke
Organiser
Santa Barbara, CA
David Turpin
Beneficiary