We help families access specialist care, before, during and after treatment.
We help families who struggle to obtain retinoblastoma care, particularly when appropriate treatment is not available close to home, or they wish to access therapy abroad.
While we cannot fund treatment or related costs, we give practical help such as facilitating second opinions, referrals and collaborative care, clarifying treatment options and assisting with travel plans.
The Challenge
Worldwide, families struggle to find prompt, appropriate care for their child.
In developed countries, the main focus is saving sight, but this requires highly specialized care. A confusing array of therapies are used today, and many families wrestle with the options, especially when previous treatments have failed.
In developing countries, families often delay treatment while seeking alternatives to recommended eye-removal surgery. Sometimes doctors refer children overseas, not realizing they could provide appropriate care locally.
Simple eye removal surgery is unavailable in a few countries (mostly small island nations), and treatment abroad is essential to save the child’s life. Overseas treatment may also be the only option to save sight when the cancer affects both eyes.
Most families cannot afford international treatment, and attempting to access care overseas can be a huge burden with lasting negative effects. Follow up care is often compromised by limited funds and poor communication between the treating hospital and local doctors.
Globally, children who receive treatment overseas or at multiple hospitals often have a poorer long-term outcome than might be achieved in their home country or at just one hospital.
Our Solution
We offer practical assistance to families worldwide who struggle to access appropriate care.
Second opinions: We help families obtain opinions from experts around the world, and support them to understand their realistic treatment options.
Consultation: We counsel families who resist appropriate treatment. Sometimes this involves setting up a teleconference with our medical director and a translator.
Supporting physicians: When doctors refer overseas, we offer guidance to ensure the child receives appropriate treatment locally if resources and expertise are available.
Collaborative care: When surgery cannot be done in the home country, we help families identify the best hospital to provide care as close to home as possible and as quickly as possible. This often involves identifying where the child and parents can travel quickly without applying for visas, matching this knowledge with hospitals providing appropriate care in those countries. We also help to co-ordinate care when the child has cancer in both eyes and tumours are small enough to attempt eye-salvage therapy that is not available locally.
Logistics: We help families secure low-cost or donated transport and housing when they must travel to access care. We also offer fundraising guidance, though we are unable to give direct financial aid.
We help families better understand their child’s cancer so they can accept recommended treatment. We also relieve many burdens when treatment overseas is the child’s best or only option. Complete wellbeing of the child and family is improved, and doctors deepen their understanding of needs and challenges so they can provide the best possible care.
Without your help, our baby would have died. I don’t have the English to say what you mean to my family. You have a very special place in our heart.
I am so glad I was signposted to you so quickly when I felt so desperate. Thank you for talking with me about the different options and for connecting me with a wonderful team of doctors. Thank you for taking my crazy midnight emergency call, and for your creative response. Thank you a million times over for helping me get the very best care for my precious child.
We made the biggest mistake in coming to Europe hoping to save our nephew’s eyes. We did not understand that until we had already spent all our money. We thank God that we found you as you helped us recover enough money from the hospital to pay for the surgery he needed at home. We should have been braver and not pursued saving his eyes so recklessly. Now we wait and pray that our desire to save his blind eyes has not cost him his life. If he survives, we know it will be because of what you did for us.
I still cannot quite believe you would help a poor family in a place at war from so far away. These have been dark days. You give us more hope than you can ever understand.
