Support Baby Jordan

Hi everyone my name is Cassandra and I am the mother to baby Jordan. On July 23, 2020 we welcomed a beautiful baby boy who to us looked very healthy. A couple days later we got discharged and took baby Jordan home to meet his older sister and brother. After being home for 5 days baby Jordan started to become more fussy and was not latching onto the breast. We immediately called his pediatrician but she just said to monitor him and if he wasn't getting  any better to bring him in the next morning but after 7 hours of baby Jordan not eating we got very concerned and took him to the E.R.. After a couple hours they admitted us to the pediatric unit but even then the doctor could not figure out what was wrong with baby Jordan so they transferred us to Stanford Lucile Packard Children's Hospital in Palo Alto, CA. The doctors still did not have a diagnosis for baby Jordan they just knew he was having uncontrollable seizures. Then on August 3, 2020 we got the worst news any parent can get our beautiful baby boy who we thought was healthy was definitely not. His MRI came back showing that about 75% of his brain was damaged and it could not be reversed. He has a metabolic disorder! Then the next day we sat down with his whole entire Stanford team. Baby Jordan is diagnosed with "Molybdenum Cofactor Defiency (MoCD)". It is described as a neonatal presentation of seizures, encephalopathy,  hyperekplexia,  and poor feeding.  It is progressive and refractory to treatment. Patients are typically normal at birth but within hours to weeks start to develop intractable seizures, brain abnormalities and severe developmental delay. Although there is no cure for his diagnosis there is a trial drug that can help his symptoms that he started August 7th. We have a long road ahead of us! Due to the hospital baby Jordan is at being far away from home we are currently renting a hotel room in mountain view to be closer to him just incase anything happens we are not very far. Stanford does have a Ronald Mcdonald house but there is a long wait list due to covid and our two other children would not be able to visit us there. We would like to ask for any donation that anyone is able to give to help with the cost of hotel, food, gas and other expenses. Any amount would help and is greatly appreciated. What also is needed is a miracle for our son so even if your not able to donate please keep our beautiful baby boy in your prayers because I know the more prayers we get God will hear and will answer. Thank you! ❤ The Bueno Family