Little Lemurs, our charity website to help children suffering from one of the Peroxisome Biogenesis Disorders PBDs

If you, or someone close to you, has a child with a peroxisomal biogenesis disorder - Zellwegers, NALD or IRD, you will know that it can be a traumatic and lonely experience. Harry's IRD diagnosis was devastating and we went through a distressing ordeal trying to find out as much as we could about treating his illness. This included finding a specialist that regarded Harry as a little person, not just as a 'a diagnosis', and his parents as equal partners and valuable assets in his care and treatment!

I found that talking to other parents of affected children could be very hard, there is no magic cure and it was difficult not to look at their situation without imagining the time when we would be there. The majority of these parents were also in the grieving cycle, some just starting like us and others who had lost their beautiful children and were learning to live with the memory of their 'angel'. However, despite their circumstances, most are absolutely amazing people with a strong desire to help anyone similarly affected. Their support was particularly invaluable to me, especially in those first few dreadful months. The network I am now involved in is non-medical, comprised mainly of parents (with a few associated professionals) and is a forum for exchanging information, help with understanding the PBDs, advice based upon personal experience and support (both practical and emotional) with the day to day difficulties we all have to deal with.

If you would like to contact me for more information on other families, our experiences or just to talk to a mum who has a child with IRD, please fill in your details on our contact page. If you could put 'Family Support' in the subject box and indicate when and how you would like to be contacted (phone, email, letter) then either myself or another of Little Lemurs Trustees will be in touch with you as soon as we can.

If you just want facts and are not ready, able or even interested in talking right now, please just let me know and I will send you any relevant information that I have and try to direct you towards some of the other sites and organisations that may be better placed to help you. If you do not want to be put on our mailing list for our newsletter please also indicate this on the form.

Whatever you decide to do, I hope you will take some comfort in knowing that you are not alone and that there are others that are going through a similar ordeal who may be able to help you and your family on this difficult journey.


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If you, or someone close to you, has a child with a peroxisomal biogenesis disorder - Zellwegers, NALD or IRD, you will know that it can be a traumatic and lonely experience. Harry's IRD diagnosis was devastating and we went through a distressing ordeal trying to find out as much as we could about treating his illness. This included finding a specialist that regarded Harry as a little person, not just as a 'a diagnosis', and his parents as equal partners and valuable assets in his care and treatment! I found that talking to other parents of affected children could be very hard, there is no magic cure and it was difficult not to look at their situation without imagining the time when we would be there. The majority of these parents were also in the grieving cycle, some just starting like us and others who had lost their beautiful children and were learning to live with the memory of their 'angel'. However, despite their circumstances, most are absolutely amazing people with a strong desire to help anyone similarly affected. Their support was particularly invaluable to me, especially in those first few dreadful months. The network I am now involved in is non-medical, comprised mainly of parents (with a few associated professionals) and is a forum for exchanging information, help with understanding the PBDs, advice based upon personal experience and support (both practical and emotional) with the day to day difficulties we all have to deal with. If you would like to contact me for more information on other families, our experiences or just to talk to a mum who has a child with IRD, please fill in your details on our contact page. If you could put 'Family Support' in the subject box and indicate when and how you would like to be contacted (phone, email, letter) then either myself or another of Little Lemurs Trustees will be in touch with you as soon as we can. If you just want facts and are not ready, able or even interested in talking right now, please just let me know and I will send you any relevant information that I have and try to direct you towards some of the other sites and organisations that may be better placed to help you. If you do not want to be put on our mailing list for our newsletter please also indicate this on the form. Whatever you decide to do, I hope you will take some comfort in knowing that you are not alone and that there are others that are going through a similar ordeal who may be able to help you and your family on this difficult journey. Thank you. Andrea Parker