Help raise 50000 for treatment for rare lymphangioma in 3 year old Ethan.

3 year old Ethan suffers from rare lymphangioma and needs to raise 50,000 for treatment.

Ethan Connolly (3) suffers from a rare condition called lymphangioma (pronounced limfangeeoma) which, although not life threatening, causes large cysts behind his eyes, face and throat. His condition affects his speech and his parents, Karen Bell and Kevin Connolly, are concerned that cruel jibes and comments over his appearance will wreck his life. They are in the process of trying to raise £50,000 to send their son for a series of life changing operations in Berlin and New York. His mum is very concerned about Ethan's rare illness, the taunts that blight his life and his first surgery that he'll have in July.

What is a lymphangioma?
Lymphatic malformations (LMs) are abnormalities of lymphatic vessels that have sometimes been referred to as lymphangiomas. They arise due to defects during embryonic development, resulting in abnormal, localized or generalized lesions that may vary in size, extent, and severity. LMs typically appear early in life, with most apparent at birth or during infancy or early childhood. Although LMs may develop in many different regions, common locations include the face and neck, the torso, under the arms (axillae), or the extremities.

Ethan's condition
Ethan suffers from rare lymphangioma, which causes cysts behind his face, eyes and throat. He has had the condition since birth, his mum Karen remembers, 'As soon as he was born, we knew there was a problem. He was having problems breathing and a paediatrician was called in. The nurses allowed me to kiss him once then they whisked him away to the neo natal unit. A few days later he was sent to Alderhey Hospital for further investigation but he wasn't diagnosed until he was three months old and he'd been sent to Great Ormond Street. There they confirmed he suffered from multiloculated macrocystic lymphatic malfomation, cysts were growing behind his eye, jawline and tongue and interfering with his breathing.'

Ethan's treatment so far
Ethan had to have a 7 hour operation to remove the cysts around his airway that were interfering with his breathing and he was fitted with a tracheostomy. Karen says, 'He was then taken back to Alderhey and we were given training on how to change the tube and the dressing around it. The tube is Ethan's back up, he can breathe alone but he has a mass above his voicebox and if that ever blocks his airway in the night, the tube is there. We were told that though the condition wasn't terminal, he couldn't be cured and that the cysts would grow with Ethan. With it being so rare and doctors not knowing that much about it, they were reluctant to operate further.'

Hope for the future
Karen was told at the end of last year that there was nothing more Alderhey or Great Ormond Street could do for Ethan. He had had two bouts of laser treatments on his tongue to remove painful purple cysts that were at risk of bursting and becoming infected but they weren't prepared to operate on any others. Karen says, 'The trouble is doctors over here don't know that much about the condition because it's extremely rare so they're not sure how to treat it.

But in January Kevin stumbled across a New York doctor on a website giving information on lymphangioma. We also joined an internet support group where there were loads of amazing before and after pictures of kids that had been treated with this condition and their ops were all performed by the same doctor Kevin had previously spotted, Dr Waner. We made contact with his secretary in January but miraculously, the second time Ethan had laser treatment in Alderhey, they mentioned that Dr Waner was coming over and asked if we'd like to meet him. We were thrilled and we met him about 4 or 5 weeks ago. Dr Waner thinks he can help but the problem is Ethan will need a number of operations and we estimate they will cost £50,000. So far we have raised about £7000 but there is a long way to go. He is due to have his first op in July in Berlin and our doctors from Alderhey will be accompanying us to learn more about the condition. I just hope that we can raise the money, people have been so kind but it's a lot to raise and Ethan's future depends on it.

Alder Hay's Statement
Lymphatic malformation is a complex and incurable condition and Ethan Connolly's case is one of the most rare that we have seen at Alder Hey. The NHS does provide treatment in this country, however opinion differs as to the benefit of operation, or if so, when it is the best time to perform surgery. The Trust currently carries out laser treatment on patients who have lymphatic malformations. We empathise with the family's dilemma and will therefore continue to work with Dr Warner and Ethan's family to provide the best possible aftercare following his operation.

Dr Warner is the world leader in this kind of treatment and consultants from Alder Hey have been invited to Berlin and America to observe Ethan's operation and others. This is an excellent example of how we work with other internationally renowned surgeons in order that we can learn from them. This is one of many similar relationships we have with healthcare professionals who are leaders in their field.

If you want to help with Ethan's case, please visit : www.ethansjourney.co.uk


This content was created on Fri 22 June 2007

More like this
Babies and Children
Illnesses
Treatments
Use this page



Privacy Terms | Advertisers | Legal Disclaimer | Contact
© 2007 TheFamilyGP.com