WHEN Sandra Lewis looks at her sweet-faced little Sanjae, she can’t help but smile. And the things this precocious three-year-old says make her laugh out loud every day. But the oxygen mask she must wear 24-hours-a-day is a constant reminder that she is sick. Very sick.

Sanjae has a rare but deadly lung condition known as fibrosing alveolitis in which cells attack the lungs and cause scarring and swelling. This prevents the lung from taking in oxygen and removing carbon dioxide from the blood, causing severe shortness of breath and asthma-like attacks. The only known cure for this condition is a lung transplant. The Lewises, a Jamaican family who live in Hackney, east London, were preparing for this expensive operation which initial estimates indicated would cost £50,000 when they got a nasty surprise. The hospital in St Louis, Missouri best qualified for the procedure on January 15 sent an estimate of a lung transplant totalling US$500,000 or £320,000. This has left the family reeling, and without much time to raise this colossal sum as Sanjae’s condition worsens.

“She’s going to the hospital more often now,” said Lewis from her home on Thursday, resting after bringing Sanjae home from a three-day hospital stay. “She never used to go more than once a month or once every two months. Now, she’s going like once a week. And you never know when she’s going to have an attack. The first week of December to now, she took a very bad turn. She really needs the transplant now.”

Lewis says the family does not know how they are going to come up with the money for their daughter’s life-saving operation, as the original £50,000 was raised only through an underground radio appeal which generated huge public interest and generous donations from children and ordinary citizens. The fund now stands at over £110,000.

She even received a letter from Prime Minister Tony Blair, giving his best wishes and offering to donate items for auction if needed. What would have really helped, says Lewis, was a financial contribution from the National Health Service or an offer to send her to have the operation but as it has to be done outside of the UK, it would not normally be covered by the government. The family’s lawyers are, however, pursuing this possibility. But in the interim, she says the family is now taking steps to have the Sanjae Lewis Trust registered as a full charity, making a wider circle of philanthropists aware of her plight.

“The media is with me now and doing a lot in terms of fundraising and appeals. There is a lot of love. People have been great. They have done brilliantly,” she said. “But we are now in the process of registering the Trust as a proper charity, for a millionaire or somebody to really donate a serious amount. And when that’s in place, the government will have to pay 28 pence for every pound that is made. But the problem is we don’t have that much time.”

In November, little Sanjae was given a year to live unless the transplant was done. Precious months have passed and the family is still faced with a seemingly insurmountable hospital fee. Lewis says the approach of persons they have spoken with from the St Louis Children’s Hospital has been unsympathetic, as they state they need full payment before Sanjae could travel to the US to await transplant.

“Just as we made the £50,000, which is what our hospital, Great Ormand Street Hospital for Children, said they would charge a foreign patient, we got the letter from St Louis. It took them three months to send us an estimate. And they say they need the money before they do anything apart from evaluate her. We’re saying this is a baby’s life. They wouldn’t even want to do the assessment before the money is there. I can’t understand why they are being so cold-hearted.”

The procedure is done in London but not on children as small as Sanjae. Though three years old, she weighs only 20 lbs and hasn’t grown since age one, when she started taking steroids and immunosuppressants that stunt her growth and make her susceptible to infections. The St Louis hospital specialises in this sort of procedure and has done over 200 similar transplants on children aged one to five.

“Great Ormand Street never performed that procedure on a child that small. And the population is very small for a donor lung, because it would have to be someone smaller than Sanjae. The American hospital population is much bigger. And it’s the best and we want the best because it’s our baby.”

What makes this especially hard to bear for the Lewises is that they have already lost a child to this condition. Jahna died in Jamaica in 1996 at age three. The diagnosis was made after her death. A rare condition which generally affects persons in their 50s, less than five in 100,000 persons are estimated to suffer from it. It is not an infection, cannot be caught from others, is not a form of cancer and is not genetic, so doctors are stumped as to why two baby girls from the same family have been affected. But this just makes Lewis more determined.

“The main reason we came here was because of Sanjae’s illness,” she said. “After I heard it was the same thing Jahna had, I decided to come so she could get better care, because the doctors in Jamaica knew nothing about that condition. They told me Sanjae had acute pneumonia. If she was born here, I think they could have controlled it. Something must have been there from earlier, because she was so small at full term, only three-and-a-half pounds but they didn’t do any tests on her. It’s a rare disease. It’s not genetic. Is it a coincidence? Why have both my babies got it? But I’m not losing another child to this thing.”

Lewis says the family — her husband, Lloyd, and five other children, three boys and two girl aged 16 to three years old — is trying to stay hopeful and are constantly inspired by the sunshine that is Sanjae, who loves Barbie dolls, cartoons and pink everything.

“My child is a wonderful child. If anything were to happen to her, it would tear my family apart,” she muses. “This is a God-bless child. She’s very bright. She’ll sit and have a conversation with you just like a big person. She’s very loving. We depend on her for the loving. She’s got this nice little hug where she just cuddles you. She, the one who is sick, will know when I am sad and look at me and say ‘Don’t worry, Mommy. I love you’. She keeps us going. She’s not only beautiful on the outside but the inside. She has such an inner strength that makes her go on. And she’s got a great will to live. We’ve got to make her live. We have to.”

The family is appealing to anyone who wants to help to do fundraising on their behalf and make appeals for donations. They are also trying to get into American mainstream. Talk-show host Sally Jessy Raphael is interested in having them on her show and contact is being made with Oprah Winfrey. Locally, Randolph Fisher of Black Music Promotions is trying to organise a charity show for her in London, featuring top reggae and dancehall acts, with links being made with US Reggae Sunsplash promoter Junior Lincoln and Desmond Young of the Jamaica Federation of Musicians to secure their support. He has also approached the American Chambers of Commerce to appeal to its network members for support.

Accounts have been set up in her name at the National Commercial Bank for persons who would like to help — 355158837 for Jamaican dollar contributions and 356512316 for US dollars. There is also an account at Barclay’s Bank in London, number 40310913, sort code 204660.