Support & Information
We hope the information and links below will provide further reading and support.
apply for the Drew-Barker Wright Grant
One of the promises we made to ourselves in the aftermath of Drew’s illness was that we wanted UK based parents, dealing with this rare cancer, to feel they had been acknowledged by a UK organisation specific to their child’s diagnosis. Something that was missing on our journey.
Consequently, we have put in place a grant application to provide some financial assistance to help you through the shockwave of diagnosis and the costs you may incur during your early days in hospital.
To apply for the grant, download the attached application form and fill it in with the help of your hospital support worker. Clic Sargent, who are aware of The Drew Barker-Wright Charity, can also be of assistance with this. We will process and validate your claim and issue the funds as quickly as possible.
Information about chordoma
The Paediatric Chordoma Guide
If you are reading this, it is likely that your child or a child close to you has been diagnosed with chordoma – a rare form of bone cancer, particularly in children.
Finding out that your child has cancer of any type can be overwhelming, but it can be especially so when it is a very rare cancer. It is likely you have never heard of chordoma before, which can make an already devastating situation all the more confusing and scary.
The Paediatric Chordoma guide has been written with all of this in mind. It is intended to provide accurate information about chordoma affecting children in an open and honest way. It will hopefully answer some of your questions or help to clarify what the doctors have told you, but we know some of the information will be upsetting to read.
Words in bold are further explained in a glossary.
Reach Out And Find Support
In the initial stages of diagnosis everything is alien to you. Having a child diagnosed with such a rare cancer means that you will have to re-evaluate every aspect of your life in a short period of time. Trying to come to terms with your situation can leave you feeling very isolated. It is important that you reach out and find support to help you through this most difficult of times.
Within the early stages of your journey, the NHS should provide you with an onsite support worker. They generally visit the ward on a regular basis and are there for you to talk through your fears and expectations. They can also help you understand the treatment that is being offered to your child and answer any questions you might have.
You should also be aware of CLIC Sargent, the UK’s leading cancer charity for children. They are an independent organisation who are resident in most children’s hospitals. They provide specialist support and can help you find the benefits that you are entitled to.
If you are looking for support on a more spiritual level, all hospitals should have a multi-faith centre where you can reach out to your own denomination. Representatives of all religions visit the wards regularly and are there to talk through your situation and offer support through prayer.
Services that can support you
As most people will never have heard of chordoma, you may find you want to reach out to other parents who have experience of dealing with this illness.
This is an organisation based in the US which serves as a resource for chordoma patients and families around the world, at any stage of their journey with chordoma. They offer various services which can be of help:
Their patient navigators can answer questions about chordoma and provide information on treatment and potential trials that may be available to you. They can also connect you with others in the worldwide chordoma community.
A private online community where parents affected by paediatric chordoma can come together to exchange information, share experience, and support one another.
The Chordoma Foundation has a free, confidential peer-to-peer support program that connects anyone touched by chordoma with another person whose experience with chordoma is similar.
If you’re interested in talking to someone who has been through a similar chordoma journey, Peer Connect can help. Once registered, you will be matched with a trained Guide who has had a similar experience with chordoma and who has had to face many of the same challenges that you now face.
All Guides are trained to provide a listening ear, serve as a sounding board and, if requested, suggest helpful information and resources. The connection between you and your assigned Guide may involve only a few phone calls, or it may develop into a longer relationship, whatever is most helpful for you.
If you would prefer something less formal there are a handful of private Facebook groups you can join.
This page is run by Drew’s charity and exists alongside the Chordoma Survivors Facebook Group (see below). It is a much smaller group, purely for parents of young children with chordoma. The page allows parents from around the world to connect, share their journey’s and offer emotional support to each other.
Before being admitted to this private group you will need to answer a few questions concerning your child’s diagnosis. This is to protect the private space and avoid spammers. Simply follow the link below and request to join.
This is a private (closed) group for people living within or receiving treatment in the UK and Ireland who have been affected by chordoma and would like a safe place to discuss any range of matters related to chordoma with like minded individuals.
Newly diagnosed patients, chordoma survivors, and family members can connect with others in the chordoma community through a private Facebook group*. This close-knit group exists to help answer questions, share personal experiences, and serve as encouragement throughout your journey with chordoma.
Approval from a group moderator is required simply to protect the privacy of the more than 1,800 members and prevent spammers from entering the private Facebook space.
*While members of this Facebook group are involved with the Chordoma Foundation and The Drew Barker-Wright Charity, the group is privately run and separate from Drew’s charity and the Foundation.