This little child had endured so much in his short lifetime. He has spent most of his life in a FL hospital but, it has become abundantly clear the hospital is not able to care for his special needs any longer. Boston Children’s Hospital has agreed to take on Jordan’s very special case.
Jordan will be airlifted to BCH and start his new journey there but, his family is struggling with the already tens of thousands of dollars in medical bills that have accrued. We are hoping to raise enough money to pay for Jordan’s journey to BCH as well as help his family move to Boston for a short time. Please consider donating to Jordan and his family so he may start a new life in Boston. ❤️
Here is the SHORT version of his long story...
With no prior indications of any issues in utero, at birth Jordan was diagnosed with cleft soft palate, atrial septal defect, heart murmur, hypotonia, jaundice, sepsis, pelvocaliectasis, hypomagnesemia, hypospadias, micrognathia, retronathia, recessed tounge, airway obstruction, severe GERD, respiratory distress syndrome, pulmonic stenosis, anemia, dialed kidneys, apnea, bradycardia and failure to thrive.
Shortly after birth he was diagnosed with Pierre Robin Sequence, a congenital condition of facial abnormalities. PRS is a sequence or chain of certain developmental malformations. The main features are cleft palate, micrognathia, (abnormal positioning of the jaw), retrognathia and glossoptosis (airway obstruction caused by backwards displacement of the tongue). This combination of features typically lead to difficulty breathing and feeding issues.
Many months later he was also diagnosed with horizontal nystagmus and conductive hearing loss due to fluid in his ears from the cleft palate. He has had to have bilateral PET tubes placed in both ears and replaced during the time of some of his surgeries. He was also diagnosed with hypoplasia on the left thumb and some neurological issues have been suspected but yet to be diagnosed. Some issues from birth have since resolved or improved over time (kidney, pulmonary, some heart and some facial feature issues). He has been hospitalized the good majority of his short life, and has underwent 10 surgeries so far resulting in many developmental delays, brachycephaly and additional feeding and swallowing regressions. Between countless ER visits and hospital admissions, his time at home was mostly filled with therapies (Feeding/speech, OT & PT) and his drs appointments with his many specialists.
Since birth he has struggled with feeding, swallowing, breathing, choking, severe reflux, vomiting and failure to thrive. He has had to have several different types of feeding tubes placed and replaced to assist with nutrition. He has had many NG tubes and G tubes placed and replaced. He has had central lines and broviacs to provide emergency nutrients when feeding was not possible and to supplement feeding during the FTT time. He has also had GJ tubes placed and replaced and more recently ND tubes also placed and replaced, all of which have not been successful in one way or the other. He has had to have some major emergency surgeries to correct the undiscovered malrotation and volvulus discovered only during surgery. He also developed adhesions as a result and needed additional emergency surgery. He has had to deal with several complications from multiple surgeries, many infections and lots of still unresolved GI issues. Also during this current admission they have discovered some additional abnormalities in his stomach and duodenum in his GI tract. After 3 months of being hospitalized, he is currently only receiving nutrition through the broviac catheter leading directly into the heart. He has not been able to feed successfully after the last few major abdominal surgeries.
Further genetic abnormalities have been suspected but have only in the very recent been discovered. A super rare DNA change has been found and located in the p part of chromosome 19. Inside chromosome 19p13.2, there is a new variant in the SMRCA4 gene. This is a super new, super rare finding which there is no information available yet for. He is only 1 of 5 in the world who have been diagnosed with this genetic mutation. There are no medical publishings and very limited studies conducted. It is believed that he is the only one in the US with this finding. What this all means to Jordan and his future is still unknown but may be related to many of his struggles.
He has come a very long way but has a long road ahead of him. However even with all these issues he’s the best boy you’ll ever meet. He will sweep you off your feet and dive right into to your heart with his sweetness, good looks and charm. No matter what he goes through he always has a big smile on his face.
We love Jordan and his parents, Pete and Ena, so much and we just want to see this little boy get a fighting chance!
-Bonnie & Bryon
- lana christian
- Jerry & Bibi Salzarulo
- Alexander & Genesis
- Malcolm Jennings
- Jean Ulmer
Organizer and beneficiary
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