Hi! I'm Katie, lucky Mom to my amazing son Alex of 'Alexander the Great Trisomy 18 Story. Alex is 5 years old and living with Trisomy 18, a diagnosis usually declared “incompatible with life”. As you can see, this is certainly NOT the case for children like him. (Here you can visit him on Facebook.)
Summary of the Baby X Case:Alex and I are raising funds for a Discrimination Against Disabled Children case, under the Human Rights Act 1998, in order to force the NHS to administer the relatively simple life-saving heart and tracheal surgery that Baby X urgently needs, which the NHS have thus far refused to do simply because Baby X is a Trisomy 18 child. This is CLEAR DISCRIMINATION AGAINST A DISABLED CHILD, who has every prospect of a fulfilling and happy life with his loving family.
We are also preparing ’best interest’ legal arguments and expert witness testimony, just in case the NHS seeks permission from the courts to withdraw life sustaining treatment from Baby X (under Section 8 of the Children’s Act 1989, or under the Court’s inherent jurisdiction). The NHS could do this at a moment’s notice. Indeed, the NHS has already refused to perform straight forward Patent Ductus Arteriosus (PDA) surgery.
Baby X’s fight is a fight for every child with a disability who may need life-saving medical intervention. Children must not be sentenced to death just because they have a disability.
Please act now!:
Alex and I are raising £1,200 to contribute toward initiating the best legal representation for Baby X and his family, in order to fight for Baby X's life.
Please contribute!
What we are trying to achieve and why:
When my son Alex (pictured above) was born, my husband and I were told by doctors to withhold all life saving care and that surgeries would not help him. They claimed he would live only 2 weeks, with a less than 10% chance of reaching his first birthday.
These statistics are often a self fulfilling prophecy. If a baby doesn’t receive the life saving interventions they will invariably die.
The discrimination against children with Trisomy 18 often prevents doctors from agreeing to these surgeries. Not just because of the outdated statistics, but also because of archaic beliefs about “the disabled not leading lives worth living”.
When I heard about Baby X, a 6 month old Trisomy 18 baby who is being denied simple life saving surgery by the NHS, I could not stand by and see a Trisomy 18 child, just like Alexander, be left to die.
This case will make a huge different for disabled people, young and old and of any condition - not just Trisomy 18. This case will establish the urgently needed legal protection against the ongoing medical discrimination against the disabled. You can help us achieve this.
The Next Step:
We believe that NHS has already acted in a discriminatory fashion by refusing to perform straight forward Patent Ductus Arteriosus (PDA) heart surgery on Baby X.
We have delayed legal action because there remains a chance that the NHS will give Baby X the tracheotomy that he also requires. The Ear, Nose & Throat (ENT) team treating Baby X have said say have no problem with giving Baby X the tracheotomy operation he needs. However, the decision to give Baby X the tracheotomy he needs has been passed to an NHS Ethics Committee, which meets in the next few days.
We do not want to adversely affect the NHS Ethics Committee hearing for Baby X’s tracheotomy by issuing legal papers, in relation to the discriminatory refusal to operate on his heart, before the Ethics Committee have made their decision one way or the other.
After the NHS Ethics Committee has published their decision, regardless of the nature of the decision, we will serve legal papers on the NHS cardiology department that refused treatment to Baby X.
The financial help we need and why:
Alex and I are raising £1,200 to contribute toward initiating the best legal representation for Baby X and his family, in order to fight for Baby X's life because his family, who resisted the pressure from doctors to have Baby X aborted, can neither afford private surgery for Baby X nor afford to pay the legal fees themselves. This legal challenge provides the best chance to save Baby X’s life.
In addition, winning this legal case will protect other disabled people, especially babies, from avoidable death due to medical discrimination against the disabled.
Please help us save the precious life of Baby X by giving £2 (approx. $2.80) or more and asking your friends to give also.
NB. We have hidden Baby X's identity to protect him from any adverse reaction by the NHS to our campaign; such as applying to the Family Court to have his ventilator switched off and thereby sentencing Baby X to a slow and painful death, before we have had a chance to complete our fund raising.
This is an emergency; please give.
Thank you.