Hi, friends. My son, Ricky T, suffers from a very rare genetic condition called CDKL5 . The condition causes severe neuromuscular and developmental disorders among other things. From the day he was born, he has and we, his family members, have been back and forth to the hospital.

In September of last year, Ricky T was hospitalized as a result of his seizures, which are everyday occurences, increasing in intensity and duration. Ultimately, this hospitalization lasted much longer than we had initially anticipated and he was in the Pediatric Intensive Care Unit for four months. During that time, his mother and I traded off staying nights in the hospital, with the both of us splitting the week. Half of the time I would sleep in the hospital, leaving in the morning to go to work. At the end of the year, I quit my job primarily because my employer's private insurance policy was, ironically, making it more difficult to get Ricky T approved for Medicaid Waiver which is what provides the up to 16 hours a day of in-home nursing care that he requires. Ricky T now has a tracheostomy, g-tube, port, and is on a vent generally all day. His medical needs are such that he cannot be left unattended, even when sleeping.  

His mom and I have been apart since shortly after he was born and, when we separated, I initiated the mediation process that led to a shared parenting agreement. For most of the time that it has been in effect, this shared parenting agreement has dictated that we, his parents, would split the time with Ricky T, with him spending roughly equal amounts of time between the both of our homes, with exceptions and accomodations made for work schedules, etc. From day one, I have been intimately involved with my son's medical care, maintaining relationships with his doctors, auditing his medical records, administering medications, and paying to enroll him in intensive physical therapy. I also insisted that he remain in a special pediatric daycare that provided developmental, medical, and custodial care, against his mother's initial protestations. (Her reasoning, at the time, was that this institution couldn't provide anything for him that we couldn't. I disagreed as did most of his medical care providers. Ironically, she now works for a related institution.)

When the time came to exit the hospital last year, I didn't object to him living exclusively at his mother and maternal grandmother's apartment, as it caters to a retirement aged population and was thus more handicapped-accessible than my house.  More importantly, my already medically fragile son was in an especially vulnerable state, and it would not have been responsible to attempt to shuttle him in the winter between two homes. It would not have been possible either, given a lack of adequate medical transport. His mother and I agreed that I would be able to see him whenever I wanted. Again, I didn't object, but I had serious concerns as, in the past, his mother had acted in bad faith on numerous occasions. As a result, I have had to retain legal representation many times and at personal expense to enforce our agreement. My hope was that the severity of the situation would allow us to overcome our differences to pursue the best medical and life outcomes for our son. During this time, his mother remained as evasive and uncommunicative as she generally is.

One of my biggest fears was that post-release from the hospital, through non-cooperation, lack of communication, and other means, my son's mother and maternal grandmother would attempt to alienate me from my son's personal and medical care, and then cite the fact that I was no longer providing the same care that they are as justification for stripping me of parental rights. This is exactly what has happened. As it is, it has been months since I last administered my son's medications. He has had medication changes in the last few months and, in violation of both the word and spirit of our shared parenting agreement, his mother did not volunteer that information. More and more, I'm finding it necessary to request police escorts into his maternal grandmother's home because she insists, despite not being a legal custodian and in contempt of court, that I need to have accompaniment to see my son when she is present.

Combined with anxiety over my son's day to day condition, work, and other mundane responsibilities, these hurdles are proving to be incredibly difficult both personally and financially. If you know me personally, you know my son is my life. But far more importantly, my son deserves to have the best life he possibly can have.
I believe, given the circumstances and especially in light of what has transpired recently, that I am the person best suited to provide this for him and that he should live at my house exclusively. Also, having consistently acted in good faith and in accord with the rules laid out in the shared parenting agreement, I can say honestly that were I to have full custody of my son, I would make accomodation for his mother to see him. She cannot say the same, and is currently motioning to amend the agreement stripping me of custodial rights.

It is with some embarrassment that I ask you, those who know me, to consider contributing whatever amount you feel comfortable to my legal effort to obtain custody of my son. I'm really ambivalent about these sorts of things, and so, would like to be as transparent as possible as to how I came up with the figure I did as a goal. It is is double what my legal retainer would be plus a portion of the cost of a portable concentrator-- something that I've wanted to purchase for my son for a long while with an eye toward being able to take longer walks in the Spring. Thank you for having read this and for helping in any way that you are able.

If you have any additional questions, I can be contacted at [email redacted] Thank you, again.