Maria Ullah, 6, who is suffering from Morquio syndrome, or MPS,  a rare genetics disorder, sits on her father Shahid's lap  in Rawalpindi, Pakistan, on Thursday, October. 20, 2016. The US embassy in Islamabad have twice refused her a visa to travel to the US where she has been offered life-changing surgery for free.  B.K Bangash / AP
Maria Ullah, 6, who is suffering from Morquio syndrome, or MPS, a rare genetics disorder, sits on her father Shahid's lap in Rawalpindi, Pakistan, on Thursday, October. 20, 2016. The US embassy in IShow more

Time running out for ailing Pakistan girl waiting for a US visa



COLOMBO // A Pakistani family awaiting a US visa for their ailing little girl is running out of time to get her to treatment that could alleviate her suffering.

Maria, 6, suffers from Morquio Syndrome, a rare genetic disease has left her frail body wracked with pain and stunted her growth. Soon she will be unable to walk because her vertebrae are compressing her spinal cord.

A US hospital has offered free surgery that could significantly improve Maria’s quality of her life, but the American Embassy in Islamabad has so far twice refused to give the family visas to travel to the United States, said the girl’s father, Shahid Ullah.

When he submitted a visa application again, he was told it would “take time”, he said. Frustrated and frightened, Mr Ullah has now turned to an American lawyer, Facebook and the media for help, starting a campaign he says could be his daughter’s last resort.

The surgery in the US has been scheduled for November 2.

“If we delay Maria’s surgery, there will be too many problems,” said Mr Ullah, who runs a small shop selling blankets in the town of Rawalpindi, near the capital of Islamabad. He said Maria has to be in the United States by Wednesday for pre-surgery tests.

“I don’t know what to do ... who should I contact,” he said. “Maria is in a lot of pain now ... she can no longer hold a pencil or a pen.”

Mr Ullah embarked on the quest to find help for Maria nearly four years ago, researching her condition and sending her blood and urine samples to laboratories in India and Germany.

Through the internet, he tracked down doctors with expertise in Maria’s condition, and families with children who suffer from the same condition in countries as far as Chile, Britain and America steered him to the Nemours/Alfred I DuPont Hospital for Children in Wilmington, Delaware. The families also rallied behind him and began crowd funding on Facebook.

The Delaware hospital first reduced the cost of the surgery from $100,000 (Dh367,000) to $82,000 but when it was clear Mr Ullah could not afford it, it said its Nemours Foundation would cover the full cost of the procedure.

Unlike in previous attempts to get a US visa, when Mr Ullah applied for the entire family and was told US authorities feared they would not return to Pakistan, this time he said he applied for a visa only for Maria, himself and his wife. He plans to leave his other two children, aged 7 and 2, behind with relatives during their stay in America, which is expected to last five months.

A US Embassy spokeswoman declined to comment on Maria’s case, citing privacy laws, but said she would look into the matter.

Melissa Harms, a California lawyer, offered to help pro bono when she heard of Maria’s troubles from a client whose child has the same disorder. “I was appalled,” she said.

Ms Harms said that housing for the family in the US had been arranged and that airline tickets had been donated.

“All of this will go to waste if we can’t get these visas approved this week,” she said.

* Associated Press

Tips for newlyweds to better manage finances

All couples are unique and have to create a financial blueprint that is most suitable for their relationship, says Vijay Valecha, chief investment officer at Century Financial. He offers his top five tips for couples to better manage their finances.

Discuss your assets and debts: When married, it’s important to understand each other’s personal financial situation. It’s necessary to know upfront what each party brings to the table, as debts and assets affect spending habits and joint loan qualifications. Discussing all aspects of their finances as a couple prevents anyone from being blindsided later.

Decide on the financial/saving goals: Spouses should independently list their top goals and share their lists with one another to shape a joint plan. Writing down clear goals will help them determine how much to save each month, how much to put aside for short-term goals, and how they will reach their long-term financial goals.

Set a budget: A budget can keep the couple be mindful of their income and expenses. With a monthly budget, couples will know exactly how much they can spend in a category each month, how much they have to work with and what spending areas need to be evaluated.

Decide who manages what: When it comes to handling finances, it’s a good idea to decide who manages what. For example, one person might take on the day-to-day bills, while the other tackles long-term investments and retirement plans.

Money date nights: Talking about money should be a healthy, ongoing conversation and couples should not wait for something to go wrong. They should set time aside every month to talk about future financial decisions and see the progress they’ve made together towards accomplishing their goals.

THE SIXTH SENSE

Starring: Bruce Willis, Toni Collette, Hayley Joel Osment

Director: M. Night Shyamalan

Rating: 5/5

THE SPECS

Engine: 1.5-litre turbocharged four-cylinder

Transmission: Constant Variable (CVT)

Power: 141bhp 

Torque: 250Nm 

Price: Dh64,500

On sale: Now

box

COMPANY PROFILE

Company name: Letstango.com

Started: June 2013

Founder: Alex Tchablakian

Based: Dubai

Industry: e-commerce

Initial investment: Dh10 million

Investors: Self-funded

Total customers: 300,000 unique customers every month

Company%20profile
%3Cp%3E%3Cstrong%3ECompany%20name%3A%3C%2Fstrong%3E%20Fasset%0D%3Cbr%3E%3Cstrong%3EStarted%3A%20%3C%2Fstrong%3E2019%0D%3Cbr%3E%3Cstrong%3EFounders%3A%3C%2Fstrong%3E%20Mohammad%20Raafi%20Hossain%2C%20Daniel%20Ahmed%0D%3Cbr%3E%3Cstrong%3EBased%3A%3C%2Fstrong%3E%20Dubai%0D%3Cbr%3E%3Cstrong%3ESector%3A%20%3C%2Fstrong%3EFinTech%0D%3Cbr%3E%3Cstrong%3EInitial%20investment%3A%3C%2Fstrong%3E%20%242.45%20million%0D%3Cbr%3E%3Cstrong%3ECurrent%20number%20of%20staff%3A%3C%2Fstrong%3E%2086%0D%3Cbr%3E%3Cstrong%3EInvestment%20stage%3A%3C%2Fstrong%3E%20Pre-series%20B%0D%3Cbr%3E%3Cstrong%3EInvestors%3A%3C%2Fstrong%3E%20Investcorp%2C%20Liberty%20City%20Ventures%2C%20Fatima%20Gobi%20Ventures%2C%20Primal%20Capital%2C%20Wealthwell%20Ventures%2C%20FHS%20Capital%2C%20VN2%20Capital%2C%20local%20family%20offices%3C%2Fp%3E%0A
UPI facts

More than 2.2 million Indian tourists arrived in UAE in 2023
More than 3.5 million Indians reside in UAE
Indian tourists can make purchases in UAE using rupee accounts in India through QR-code-based UPI real-time payment systems
Indian residents in UAE can use their non-resident NRO and NRE accounts held in Indian banks linked to a UAE mobile number for UPI transactions

Our legal consultant

Name: Hassan Mohsen Elhais

Position: legal consultant with Al Rowaad Advocates and Legal Consultants.

Company%20Profile
%3Cp%3E%3Cstrong%3EName%3A%3C%2Fstrong%3E%20HyveGeo%3Cbr%3E%3Cstrong%3EStarted%3A%3C%2Fstrong%3E%202023%3Cbr%3E%3Cstrong%3EFounders%3A%3C%2Fstrong%3E%20Abdulaziz%20bin%20Redha%2C%20Dr%20Samsurin%20Welch%2C%20Eva%20Morales%20and%20Dr%20Harjit%20Singh%3Cbr%3E%3Cstrong%3EBased%3A%20%3C%2Fstrong%3ECambridge%20and%20Dubai%3Cbr%3E%3Cstrong%3ENumber%20of%20employees%3A%3C%2Fstrong%3E%208%3Cbr%3E%3Cstrong%3EIndustry%3A%20%3C%2Fstrong%3ESustainability%20%26amp%3B%20Environment%3Cbr%3E%3Cstrong%3EFunding%3A%20%3C%2Fstrong%3E%24200%2C000%20plus%20undisclosed%20grant%3Cbr%3E%3Cstrong%3EInvestors%3A%20%3C%2Fstrong%3EVenture%20capital%20and%20government%3C%2Fp%3E%0A
Company%20Profile
%3Cp%3E%3Cstrong%3ECompany%20name%3A%3C%2Fstrong%3E%20Hoopla%3Cbr%3E%3Cstrong%3EDate%20started%3A%20%3C%2Fstrong%3EMarch%202023%3Cbr%3E%3Cstrong%3EFounder%3A%3C%2Fstrong%3E%20Jacqueline%20Perrottet%3Cbr%3E%3Cstrong%3EBased%3A%3C%2Fstrong%3E%20Dubai%3Cbr%3E%3Cstrong%3ENumber%20of%20staff%3A%3C%2Fstrong%3E%2010%3Cbr%3E%3Cstrong%3EInvestment%20stage%3A%20%3C%2Fstrong%3EPre-seed%3Cbr%3E%3Cstrong%3EInvestment%20required%3A%3C%2Fstrong%3E%20%24500%2C000%3C%2Fp%3E%0A

Best Academy: Ajax and Benfica

Best Agent: Jorge Mendes

Best Club : Liverpool   

 Best Coach: Jurgen Klopp (Liverpool)  

 Best Goalkeeper: Alisson Becker

 Best Men’s Player: Cristiano Ronaldo

 Best Partnership of the Year Award by SportBusiness: Manchester City and SAP

 Best Referee: Stephanie Frappart

Best Revelation Player: Joao Felix (Atletico Madrid and Portugal)

Best Sporting Director: Andrea Berta (Atletico Madrid)

Best Women's Player:  Lucy Bronze

Best Young Arab Player: Achraf Hakimi

 Kooora – Best Arab Club: Al Hilal (Saudi Arabia)

 Kooora – Best Arab Player: Abderrazak Hamdallah (Al-Nassr FC, Saudi Arabia)

 Player Career Award: Miralem Pjanic and Ryan Giggs

COMPANY%20PROFILE
%3Cp%3E%3Cstrong%3ECompany%20name%3A%3C%2Fstrong%3E%20Klipit%3C%2Fp%3E%0A%3Cp%3E%3Cstrong%3EStarted%3A%3C%2Fstrong%3E%202022%3C%2Fp%3E%0A%3Cp%3E%3Cstrong%3EFounders%3A%3C%2Fstrong%3E%20Venkat%20Reddy%2C%20Mohammed%20Al%20Bulooki%2C%20Bilal%20Merchant%2C%20Asif%20Ahmed%2C%20Ovais%20Merchant%3C%2Fp%3E%0A%3Cp%3E%3Cstrong%3EBased%3A%3C%2Fstrong%3E%20Dubai%2C%20UAE%3C%2Fp%3E%0A%3Cp%3E%3Cstrong%3EIndustry%3A%3C%2Fstrong%3E%20Digital%20receipts%2C%20finance%2C%20blockchain%3C%2Fp%3E%0A%3Cp%3E%3Cstrong%3EFunding%3A%3C%2Fstrong%3E%20%244%20million%3C%2Fp%3E%0A%3Cp%3E%3Cstrong%3EInvestors%3A%3C%2Fstrong%3E%20Privately%2Fself-funded%3C%2Fp%3E%0A
Company%20Profile
%3Cp%3E%3Cstrong%3EName%3A%20%3C%2Fstrong%3EDirect%20Debit%20System%3Cbr%3E%3Cstrong%3EStarted%3A%3C%2Fstrong%3E%20Sept%202017%3Cbr%3E%3Cstrong%3EBased%3A%3C%2Fstrong%3E%20UAE%20with%20a%20subsidiary%20in%20the%20UK%3Cbr%3E%3Cstrong%3EIndustry%3A%3C%2Fstrong%3E%20FinTech%3Cbr%3E%3Cstrong%3EFunding%3A%3C%2Fstrong%3E%20Undisclosed%3Cbr%3E%3Cstrong%3EInvestors%3A%3C%2Fstrong%3E%20Elaine%20Jones%3Cbr%3E%3Cstrong%3ENumber%20of%20employees%3A%3C%2Fstrong%3E%208%3Cbr%3E%3C%2Fp%3E%0A